Using Online Caregiver Forums: Some Observations and Thoughts

Caregivers need support groups but often find it difficult to get away from their responsibilities and attend an in-person group. Their available free time may be too small a slot, or may not match the time of a scheduled support meeting. The more overwhelmed and stressed the caregiver is, the less likely it is that this caregiver can reach an in-person group.

This situation is really sad because support groups reduce caregiver isolation and provide a safe forum to exchange stories, problems, and suggestions with each other. Attending even a few meetings can transform how caregivers perceive their situation; they start finding the challenges more bearable, the changed behavior is taken less personally, and they are able to use suggestions they get from others and even generate creative solutions themselves.

Given the practical problems related to attending in-person groups, we need to examine the use of online forums for caregiver sharing and support. I am using this blog post to share my observations and thoughts, and give my suggestions, based on a number of online support groups that I have been part of–some as an active participant, and some as a lurker.

There are many types of online caregiver forums. At one end of the range, there are large forums that have structure and moderation and are handled by a group of committed persons/ some volunteer organization, and continue for years. And then we have small, informal groups that some caregivers form to stay connected and support each other, with membership varying from five or six to around fifteen or so.

Let me first share my observations and thoughts about smaller, informal caregiver groups. If you have been part of such groups, I’d love to hear from you about your experiences and impressions…

In the last five years, I have seen many instances of caregivers creating their own online groups. Some groups emerged after caregivers met during some face-to-face support group meeting or caregiver training and decided to stay in touch online. Others emerged when caregivers happened to meet online and decided they needed to get together for mutual support, and therefore gathered a group by bringing in friends (and friends of friends) or using social media. These groups were relatively informal with no active moderation. While some members were volunteers or professionals were included, they were not present in the capacity of a moderator or administrator or even an expert, just present as members.

Firstly, the groups were typically very fast to set up. Some caregiver would tell another, let’s set up something to stay in touch, and then a few of them decided on a technological platform they all were comfortable with and plunged in right away. I’ve seen email groups and Facebook groups (but not bulletin boards) getting kicked off and working full steam within days of someone suggesting starting a group.

The initial momentum was heartening. Caregivers were clearly eager to get and give support and they openly shared their situations and problems, and were generous to each other while empathizing and sharing suggestions. Conversations were meaningful and it was clear that a rapport was building. Of course, the usefulness of the group depended on the members’ availability, involvement, knowledge, and degree of articulation, but definitely most members found the groups helpful.

However, the tempo faded after a while. Participation died down even though no one specifically unsubscribed. Some queries got no responses or just perfunctory responses. Queries stopped after a while. Some subsets formed when two or three caregivers began corresponding directly/ established phone contact, but the online forum was no longer active.

One typical characteristic of these small informal groups was the lack of detailed rules and active moderation. This initially added to the sense of friends getting together, an informal air, and worked in some groups, but not in others.

There were problems, too. Everyone was not happy with the group; some even got stressed by it.

Here’s one example. One caregiver (I’ll call her AAA) was handling an aggressive parent with dementia alone, day and night, and did not have an attendant to help. Siblings had moved away and would not call. None of the other caregivers were facing such a severe challenge; they had at least some family or helper support, and not all were actually handling the daily care tasks. When AAA would post her problems and others responded, she was very unhappy with the responses because she found the responses obviously impractical given her situation (take a break, get help from your sibling) or she felt dismissed because someone would tell her to lighten up (don’t take yourself so seriously, have a good laugh instead, you’ll find it funny when you look back at it later).

After a few such responses, AAA wrote directly to me to say that the group stressed her because she had expected at least fellow caregivers to understand her problems, but now she felt even more isolated. She felt the group was not a safe space for her to unburden herself or seek help. She stopped participating there, and she and I continued our interactions on a one-to-one basis using email and phone. It was ironic and unfortunate that a support group increased her isolation.

I think one problem is the way we respond to online interactions. An in-person support group meeting is an immersive experience; caregivers see facial expressions and hear the emotion in the voices when problems are shared. Even if someone’s situation seems very different from their own, the face-to-face interaction makes it easier to pay attention and feel empathy. Selecting an appropriate response is easier, and it is easier to see when to avoid humor or realize what could sound preachy or trite or judgmental. Suggestions and comments are therefore better worded, longer, and supplemented by gestures and facial expressions that reaffirm the spirit of support.

On the contrary, in an online forum, people may not read posts/ mails carefully, or may type a hasty reply without grasping some key facts from the original post, or may sound harsher than they intended to. Or, even if they write well enough, the person reading it may be oversensitive about some phrase or suggestion, and feel hurt.

My impression, based on my (limited) experience, is that small, informal online groups function better if the members have met each other or talked to each other before interacting through the forum, because even a few earlier interactions or in-person meetings make them more willing to share experiences and create trust. They are also less likely to take offense or interpret responses as put-me-downs.

The problem AAA faced is only partly because of the characteristics inherent in the online mode of interacting. There are other factors, too. We use the word “caregiver” as if all caregivers were the same, but there is a vast diversity in caregiver situations. A small, informal online group of diverse caregivers does not include enough members who can understand and support each other for every type of care situation.

Another thing that made me uncomfortable in some of these groups was when members posted specific suggestions and advice on medication and alternate treatments. These alternate approaches were projected as medically sound, but were recommendations that I knew were scientifically suspect. Data posted to counter the claims was seen as obstructing “helpful” advice. I felt that this was the sort of situation that would typically warrant intervention by a knowledgeable moderator, but the group was not structured for moderation.

None of the groups inducted new members except for a token few in the beginning. Meanwhile, existing caregivers “moved on.” Caregivers don’t need help from the group once the person stabilizes and they get the knack for handling the situation. Or if the person reaches a different state for which the existing support group is irrelevant. Or the person dies, and the caregiver has to resume a career or rebuild a life. My impression was that existing members were not keen on new members because that would be adding an unknown factor in a group that had some sort of rapport.

Let me now share some observations based on a much larger, structured group with formal rules and guidelines on what sort of posts and language are allowed, and with moderators overseeing group functioning. Members include several caregivers coping with diverse care situations.

As in the smaller groups, I saw the participation of individual caregivers change a lot over time. Some rarely posted; others posted actively for some time but then reduced participation or even stopped it; some were sporadic in participation. However, as the number of caregivers was very large, and as new caregivers kept joining, the interactions remained vibrant and helpful. No query remains unanswered. The moderators, too, actively participated and keep the flow of exchanges going.

No group can be free of misunderstanding, and I did see occasional posts that seemed judgmental or harsh but usually some other member or moderator responded almost immediately to express enough empathy with the original poster and related query, thus diffusing any possibility of hurt. Inconsiderate comments were not tolerated. Spam messages or misleading promotion of dubious cures were similarly handled by moderators and other group members.

As I write mainly out of concern for caregivers in India, I must note one problem: the membership in the larger caregiver forums is usually from outside India, and many of the queries and comments assume a very different culture and very different types of system and support. Discussions on end-of-life care, legal and financial issues, use of services, availability and regulation of helpers, all are based on a very different set up. That means many suggestions can be used only partially.

So what can I suggest caregivers in India who are looking for online support?

Firstly, online support groups as such are definitely worth considering. Online groups provide 24×7 availability of a forum to post. The sense of community helps. You may get empathetic responses and feel less isolated, and you may get some useful responses.

If you already know some other caregivers with whom you share some trust/ rapport, getting together and creating an informal online group is worth considering. Of course, expectations need to be limited, and such groups may not suit caregivers whose situation is very unusual and different from that of all the existing members. And members need to understand that such groups cannot be depended on for medical advice.

Also, please do look at existing dementia forums/ caregiver forums run by volunteers/ organizations/ groups of concerned persons. They will reduce your sense of isolation and give you some idea of the problems and solutions others use. Even when the exchanges in such forums don’t always suit your context, they could contain useful pointers. Also, look for online support groups set up for special situations, such as for specific types of dementia (Lewy Body, FTD).

A good approach is to join multiple groups, and understand which type of need each of them can meet. Use these groups depending on the fit, participating according to where you feel comfortable sharing your problems and also sharing your suggestions for the problems others face.

Here are a few things to keep in mind before participating in an online group.

Groups have different degrees of privacy, and even if a group is supposed to be private and if posts are kept private and confidential as per the technical platform used, ultimately the actual implementation depends on the other members, too. If you are posting something very personal, and are very particular that no one should be able to link your posts to you, consider groups where you can use a pseudonym and do not share details that could identify you.

Some groups (such as groups on Facebook) may be confidential, but you need to enroll with your real name. Members can click through your name from a post you made in the group and see your public profile. Keep that in mind if that seems to be a problem to you.

Also, in very large groups, keep in mind that your family members and friends (or their friends) may also join. Keep that in mind when posting details or rants.

Well, those are my thoughts and observations related to caregivers considering online support groups, and I would love to hear from you about what your own experiences have been on the effectiveness and usefulness of such groups, or your suggestions to caregivers on this.

If you are a concerned person trying to help persons living with dementia, you may be considering setting up an in-person group or an online group. I have created two draft documents that put together my thoughts on what setting up and running online groups and in-person groups involve. Both these documents are available online and also for download, and you can refer to them. I would appreciate any comments you have, so that I can refine the drafts and release improved versions. The page where you can view the documents or download them is here: Create dementia care support groups (includes download). The two individual documents are available for download at Setting up and maintaining an online caregiver forum to support dementia caregivers (PDF file) and In-person Dementia Support Group Meeting Guidance Document (PDF file).

I really would like to hear from you, either as comments below or as an email (check my contact page to know my email id).

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Helping professionals appreciate the realities of dementia home care

I started sharing my experiences and thoughts on dementia and care online over six years ago. Even back then, I considered awareness to be the key component–that included informing the general public and persons handling services about dementia and related care. I didn’t realize then that even volunteers and professionals working in this domain, persons who were training caregivers and counseling them, needed to become more sensitive and informed about how tough it was to provide home care for someone with dementia.

I’d heard the advice that volunteers and professionals gave caregivers, of course. They taught relevant skills like communication, but the advice also included material I considered simplistic and impractical. Nor did they pay emphasis on how tough the caregiver adjustment would be, how mistakes were inevitable, how emotional the journey was.

Then, around three-and-a-half years ago, I heard a volunteer criticize caregiving families while addressing a group of would-be volunteers. This volunteer stated that families were “cruel” and “selfish” and blamed them because they did not take patients to doctors as often as the volunteer considered appropriate. Moreover, this person criticized caregivers for not spending enough time with the patients and not being creative enough, and compared this time and care to what professionals provided in institutional settings (the very, very few such facilities that exist).

I was stunned to realize the extent of this volunteer’s ignorance/ disconnect with home caregiving realities.

To me, the difference between the two settings–institutional and home–had always been obvious. In an institution, workers have opted for this career. They are trained, have the benefit of multiple specialists, and operate in a well-designed facility. They work for limited hours and have no concurrent roles and responsibilities while at work. They have no emotional past with the patient and are not traumatized because the deterioration is happening in someone they have know for years. And so on. Even a bit of thought would throw up a range of aspects in which the institutional care situation differs from home care. I could understand lay persons not appreciating this difference in situations, but I expected volunteers working in the dementia care domain to have a more realistic view. How could such a person be ignorant of the home care situation, and so judgmental?

Clearly, even trainers and volunteers in this domain needed to be informed about dementia home care realities.

I began putting together a note on the context of dementia home care in India. It took some pruning and prioritizing to and redrafting to create a short, compact version. I uploaded this note on slideshare.net at Dementia Home Care: Context and Challenges in India.

Initially I saw the note as something that volunteers and professionals may find useful to help home caregivers through relevant and practical advice. But later I realized that the note can also help caregivers. It could be used to get an idea of their role and how tough it may be. It could also help them understand what advisers may be assuming and know what they need to clarify/ explain in order to get pertinent advice.

The note, available on slideshare at Dementia Home Care: Context and Challenges in India, can also be viewed in the reader below.

I have continued to try and explain the realities of home caregiving to volunteers and professionals. This includes one-on-one discussions with volunteers when I hear them say something insensitive. If they seem open to listening, I share data and anecdotes on home caregiving challenges they may have missed. Sometimes I get a chance to present the family caregiver perspective to professionals in forums. Below, for example, is a recent presentation I made on caregiver issues and challenges.

The presentation, available on slideshare at Caregivers: Issues and Challenges Faced, can also be viewed in the reader below.

Much still needs to be done to improve the professionals’ understanding of home care realities. I continue to hear comments that confirm that even professionals who make presentations on caregiver stress have limited understanding of the range of issues and challenges and this results in their getting critical and judgmental, even blaming caregivers if the care is not happening in ways they feel is appropriate.

I think this incomplete understanding of home care realities is partly because caregivers are unable to share their situations with honesty and in sufficient detail. Multiple reasons exist for this reticence, and not enough is happening to facilitate bridging the disconnection between families and professionals.

One such incident happened a few months ago, when a professional who was talking about some caregiver query burst out in an obviously frustrated tone: “I don’t understand why caregivers get tired doing the work. Can’t they do the work without getting so emotional and involved? And why do they complain? They all chose to be caregivers, didn’t they? You chose to be a caregiver. You needn’t have been a caregiver if you didn’t want to.”

The person who said this is very active in this domain and meets patients and families regularly. Now me, I’m not a caregiver any more; my mother is dead. Even when she was alive, I had stopped needing support and empathy from professionals many years ago because I created my own emotional toolbox to cope. My first reaction at this outburst was extreme discomfort. I want to get away from this conversation. Then I paused because I realized that this person would be continuing to meet patients and families and would continue to advise them with this poor understanding of caregiver challenges.

I spent the next hour or so explaining things to this person using facts, concepts, anecdotes. Things such as how home care needed far more emotional adjustment and strength than institutional care such as what this professional gave. As for caregiving being a choice, I asked, “You say choice. What option do you think I had if I did not want to care for my mother? A choice means you think there are options. List the options for me.” Interestingly, this person kept repeating the “caregiving is a choice” like a mantra a number of times before realizing that there was no option, hence no choice.

The conversation caught me unawares. I had expected this profile of persons to not need any explanation. Fortunately the professional was a good listener and ended the conversation thanking me, saying, “I think I am beginning to see what you mean; no one ever talked to me about these type of problems before.” Clearly the professional had heard families express overwhelm but had not heard explanations of why they were overwhelmed.

To me, this confirms the Catch 22 nature of the problem.

Yes, most volunteers and professionals don’t appreciate home care realities. But not understanding persons of a different profile is a common problem. The fact is, most of the times, we don’t invest time and energy to truly understand the life situation of others. Also, we don’t find it easy to appreciate problems that others face–we remain caught up in our own world views and problems. And yes, caregivers obviously want to be understood and respected, but they are also unable to explain their situations, either out of reluctance and privacy, or because they don’t trust the audience, or because they don’t have enough time for sharing their situation.

Essentially, if volunteers and professionals do not understand and appreciate the home care realities, and if this stops caregivers from explaining their situation and problems, we have a logjam. Maybe if just a few families opened up, changes would begin.

I’m not sure whether to be hopeful or despondent as such; I swing between the two. Well, I’m doing what I can…

Links/ sites referred to in this post:

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Need for well-designed dementia awareness campaigns

I am convinced that increasing the level of dementia awareness is essential to improve the quality of life of persons with dementia and their families and caregivers, and I’ve often blogged about this. I also mentioned this in my caregiver story that I wrote for the Alzheimer’s Disease International’s March 2014 newsletter, titled “Better dementia awareness will make a difference” (available on page 8 of this downloadable PDF file). I have also been discussing possible priorities with some volunteers. I think it is time to write a somewhat more structured blog entry on the importance of well-designed dementia awareness campaigns. (Though structured, this is an opinion piece, not some expert evaluation/ study report)

Dementia awareness is pathetic in India, a situation confounded further by misinformation and stigma related to the symptoms and to words like dementia and Alzheimer’s Disease. This results in multiple problems for affected persons, and my contention is that spreading dementia awareness is the key to improving the situation, and the fastest way to change things in the Indian society. For the purpose of this discussion, I look at the following broad areas:

Benefits of increased awareness

Awareness of dementia is a foundational requirement for any work in supporting persons with dementia and their caregivers. For example, without sufficiently correct and widespread awareness of dementia, you cannot create a dementia friendly society. Yet several benefits of higher levels of awareness are not obvious. Here’s a list of some salient benefits:

  • Early diagnosis and better medical support will be possible: With higher awareness levels, a person’s symptoms will be recognized as possible signs of dementia earlier by the persons suffering from them and/ or others who interact with this person. Persons with dementia may seek help earlier, and so may their families. Physicians and specialists may go through the diagnosis process (instead of dismissing concerns as old age or personality changes, etc.). Diagnosis may happen at the early stage itself, and a suitable mix of advice and medical support can improve the quality of life of the person.
  • Societal support for families coping with dementia will increase: An overall societal acceptance/ understanding of the realities of dementia will make it easier for families to explain their specific situation and ask for help. An open, stigma-free recognition of dementia will mean that persons with dementia and their caregivers can ask for and receive appropriate help and support from persons around them, such as from friends, relatives, colleagues, etc. Persons around a family coping with dementia will be more understanding and supportive, and not mock at the person’s symptoms or suspect the caregivers’ motives/ actions.
  • Dementia and care situations, experiences and tips will become part of normal public conversations: With dementia and care challenges out in the public discourse, dementia will increasingly be incorporated in various arts and productions. More movies, stories, etc., will include dementia situations. When some people start opening up about their personal experiences of dementia, others will, too. Experiences and tips will be shared, creating a supportive community. This will be very different from the current scenario where each family goes through its own learning curve in isolation and gets overwhelmed.
  • Dementia and care topics may become part of educational systems. So students may be better educated on this, thus adding to overall societal awareness levels.
  • Dementia related professions and careers may become viable/ attractive options: Persons considering career options may want to work in dementia research, or in offering dementia services.
  • Entrepreneurs may be attracted to set up ventures: When entrepreneurs realize the growing need for dementia-related products and services, they may invest in them. This can further be facilitated if nodal bodies also create guidelines and standard project reports for potential services that such entrepreneurs can use as starting points.
  • Corporates may include dementia projects in CSR initiatives: When a cause becomes prominent, it can attract the attention of corporate CSRs and other such entities, who may then take the awareness campaign forward some more steps by actively working for it. Or they may design products and services or sponsor research or help conduct studies, such as epidemiological studies, or fund the research required for preparing reports, and so on. They may even decide to adopt a city/ town/ locality and make it dementia friendly!
  • Misinformation can be removed by the availability of abundant, authentic information: Currently, many myths and misinformation campaigns exist around dementia, including misleading “miracle” products and services that make tall claims about what they can achieve. These are able to thrive because genuine information is not available. Good levels of dementia awareness will squash such misinformation/ exploitation.
  • Overall willingness of persons to participate in the dementia cause will increase: This may be in terms of willingness to take part in clinical trials and other studies, do volunteer work, etc.

Essentially, as dementia awareness grows, the advantage is not just the increased quality of life and support for persons with dementia and their families. There is a high likelihood of a multiplier effect as more and more persons get drawn into the cause and participate as advocates, volunteers, professionals, product/ service providers, and so on. Often when thinking of how awareness can help, volunteers do not give enough weight to the way awareness can snowball to create a movement. Yet awareness is not just the foundation required for more work on dementia and caregiving; awareness is also the motivator that can make some persons concerned and involved enough.

In my opinion, awareness has the potential to create a transformative movement to address this serious area.

Awareness campaigns are an effective use of limited resources

Let’s face it; we just don’t have enough funds and persons to do all that needs to be done for the dementia cause. Therefore, we must use these limited resources available for the dementia cause by choosing projects carefully, after duly evaluating the trade-offs. For example, if we focus on and spend effort on creating a “dementia village” or a superb respite care, or making one city meet the criteria of a “dementia friendly community”, that may mean that we have to drop some other project.

Given this need to choose what is the best use of resources, I favour giving priority to spreading dementia awareness through a region/ state/ even entire India using well-designed campaigns, as compared to taking up projects that aspire for far better dementia support in some localized pocket. Reasons:

  • Whatever initiative is chosen, dementia awareness is a foundation, and everyone involved in that initiative will anyway need very good levels of sensitization to dementia realities and also skills for supporting dementia. So an awareness campaign is anyway an integral part of any project. Running such a campaign in a well-designed, effective way is therefore unavoidable; the only aspect to debate is on the scope of such a campaign–should it be just one city/ facility, or a state/ region/ nation? Scalability may be a factor worth examining.
  • We have no justifiable basis for deciding that only a particular city should benefit from the deployment of common resources. The estimated persons with dementia in India in 2010 were 37 lakh (3.7 million), and if we think of the family members and close associates trying to support dementia, the number of affected persons is even higher. This number is increasing every day. To focus scarce resources on just one city means ignoring other cities, other states, other regions. Focusing on big or medium cities ignores smaller cities, villages, tribal areas, and so on. How can such selective focus be justified? Surely any nodal body approach needs to embrace diverse populations first.
  • The number of persons who may benefit from a local, focused effort is very low. A local effort may benefit dementia-affected persons in a local populace. On the other hand, the number of persons who may benefit from widespread awareness campaigns is much higher. Awareness campaigns can reach distant corners and a wide range of persons in ways that focused-location efforts cannot. They are more inclusive.
  • Awareness is an effective approach when resources are scarce, because when awareness increases, there is a multiplier effect and more people are drawn to the cause. More people get concerned and may take initiative and pick up the skills that will further improve the situation. Awareness can create a far more widespread self-sustaining model of citizen involvement than a localized effort may.
  • Some types of focused initiatives don’t create any advocates at all. One contender for time/ effort of volunteers is setting up services like respite care. A lot of investment goes into setting up a good facility that may benefit a few people, maybe 10 or 20, maybe somewhat more. Yet once the person with dementia passes on, the families do not necessarily contribute back their time and effort to the cause. They may not become advocates either; most of them have used this service because they were overwhelmed and later, they “move on.” While we definitely need respite cares, we have to appreciate that these cannot replace the priority we need to give awareness campaigns.

So yes, we need models of good dementia care, we need centres of excellence, etc. Focused efforts for ideal respite care, ideal dementia friendly city, and so on, can create nodal points that demonstrate and disseminate best practices. But again, we have to weigh the resources required and see the trade-offs.

My contention is that the potential gratification of creating a small but visible centre of excellence should not overshadow the broader and more inclusive benefits possible by spreading awareness. We may need solid work for such awareness campaigns, but we must not forget that a well-designed awareness campaign can create a paradigm shift.

Sustained, well-designed campaigns should be used to make a lasting difference

We have already got some sporadic efforts to increase dementia awareness. These typically include:

  • Efforts by persons who talk about their dementia-related experiences at an individual level in private circles: This is not very common in India as most caregivers do not talk of their experiences at all, or only talk to close friends. While important and good when it happens, it is much, much below the levels when it could make a transformative difference in either visibility or information. Also, as many caregivers have remained overwhelmed and less-informed through their dementia care journey, what they share is often more focused on problems faced and may lack any effective tips/ suggestions or reliable understanding of dementia.
  • Efforts by volunteers/ concerned persons/ caregiver alumnus who are informed and articulate: Unfortunately, such dissemination is very local in scope, and again, not sustained and intense enough to be transformative beyond the immediate circles. Also, persons working on spreading awareness like this often have other projects, too, and the awareness aspect does not get their ongoing, uninterrupted attention and does not pick up momentum or coverage.
  • Efforts put in across the nation for the few days corresponding to World Alzheimer’s Day or some such event: For a few days a year, dementia gets some space in newspapers and some visibility as “walks” and “talks” because there is an event that triggers it. Even in this, newspaper reports, often written in a hurry, contain inaccuracies. Coverage remains shallow, and not informative enough, but yes, for a few days, there seems a chance that awareness is being worked on. Then the event passes, and the momentum fizzles out. Worse, initiatives that were announced or facilities that were inaugurated may fall to the side.

I see several non-optimal aspects in this current awareness-spreading scenario:

  • All these efforts are too sporadic and scattered to add together and create the momentum we need.
  • Many events/ talks organized can only reach local persons and will only be noticed by persons already somewhat aware of dementia. Persons who know nothing about dementia (or feel it does not concern them) are not targeted sufficiently
  • There is no centralized database that volunteers can draw upon for material that can help (like slides in various languages, videos, etc.), so individuals trying to spread awareness essentially duplicate quite a bit of effort. Also, some information they disseminate is loosely worded or even incorrect, adding to misinformation. There is no validation of the quality of information spread by volunteers.
  • There is no framework wherein individuals can contribute smaller packets of effort towards the awareness campaigns. So many persons who may have spoken up (if they had the encouragement and a framework to fit into) do nothing.
  • There is no check on mistakes made in media reports, which sometimes, written in a hurry and eager to be captivating, end up making mistakes. No corrections are printed.

In my opinion, the current efforts to spread awareness fall woefully short to what we in India need as a nation likely to face increasing numbers of dementia cases.

I am not aware of (and I’d be happy to be corrected) any sustained, well-designed, nation-wide campaign for spreading dementia awareness. Let me, however, describe what I think can be useful.

  • The campaign should be designed for the diversities seen in Indian culture, including regional cultures in multiple Indian languages
  • The campaign design should be made suitable for low-literacy/ illiterate audiences, possibly by exploiting audio and video media, TV, plays, etc.
  • The content included should address dementia symptoms and progression, practical examples of impact of dementia on the life of the person and family, and general tips on how to interact with the person and empower them. The content should not in any way imply that Alzheimer’s is the only cause of dementia, or that memory loss is the only/ main symptoms, or that it happens only to old persons.
  • The campaign presentation should be easy to understand and remember and make dementia more immediate to the target audience. It should convey that dementia can happen to anyone, and also that anyone can be thrust into the role of a caregiver. The presentation should not be alarmist/ negative in its portrayal.
  • The campaign should make it clear that caregiving is tough and exhausting, and is well beyond the normal tensions of supporting mentally alert elders. It should make it clear that caregivers need support, not criticism.
  • The campaign can be powerful and effective by suitably integrating relevant social psychology concepts. It should be well-designed, and be carried out on a sustained basis. The message/ concepts will not stick in the minds of the audience in the first instance; the messages need to be repeated in various ways.
  • The campaign should negate myths and misinformation. It could use society role model/ celebrity interviews or other such means to remove stigma or negativity or secrecy attached to dementia. It should also remove any stigma/ societal judgment related to caregivers feeling overwhelmed or stressed.
  • Supplementation of campaigns with authentic information available in multiple Indian languages.
  • Supplementation of campaigns with information centres/ helplines that provide more information and clarifications.

Of course, this is far from enough when it comes to what the dementia cause needs. We need more products and services. We need support systems. We need financial support. Yet I feel that awareness is how one can kick-start the process, because once more people understand that dementia can happen to anyone, that anyone can be a caregiver, that current medication cannot prevent or cure, more people will be concerned. They will put pressure on the government for resources. They may volunteer. They may set up services. So much needs to be done that we need every helping hand. We cannot get the momentum and energy we need for the cause if we don’t improve awareness. Without more awareness, we will just continue to have a handful of persons, working for an ever-growing population of families coping with dementia.

Do share your comments below. I look forward to reading what you have to say (you can post anonymously if you wish)

Edited to add: If you are concerned about dementia/ care in India and are a volunteer/ potential volunteer/ just want to know more, please do check out this page: Resources: If you want to help caregivers/ spread dementia awareness. This page includes links to several discussions on areas that individuals (or groups/ corporates) can consider for contributing their own bit for this cause. There are also several resources/ documents that can be viewed/ downloaded in this section.

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Creating Dementia Friendly Communities: some thoughts

I first heard of “dementia-friendly community” because of the work of Norman McNamara (more popularly known as Norm Mac, or just Norm). Norm was diagnosed with dementia some years ago and has, in addition with coping with his dementia problems, worked tirelessly to spread awareness of dementia and to make sure that inputs from persons with dementia are heard and valued by policy makers and others working in the field of dementia. He has also been working to make Torbay, UK, a dementia-friendly community.

It seems obvious (once one pauses to think of it) that persons with dementia must be treated as major stakeholders in decisions and actions that will impact them. The best way to support persons with dementia is to ensure that the community around them is dementia aware, friendly, safe, and empowering so that they can live as normal and fulfilling a life as possible. But creating dementia-friendly communities requires work on multiple fronts, and implementation has been low. The U.K. is in the forefront of this work, with some other countries getting more active recently.

In August 2013, Alzheimer’s Society released a very interesting report, that can be downloaded: Building dementia-friendly communities: A priority for everyone. This defines a dementia-friendly community as follows:

A dementia-friendly community is one in which people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them.

This report provides data from surveys of persons with dementia, describing their experience of living with dementia and the difficulties they face. It suggests actions that can help create a dementia-friendly community. Information is also available on their website here. There are many websites where concerned organizations discuss related concepts and provide data from surveys and on projects they have undertaken, for example Creating Dementia Friendly Communities (Ireland)

From what I understand, the concept of dementia-friendly communities is still evolving, and definitions, interpretations and approaches vary from culture to culture. The concept fascinates me, and I’ve been thinking about it and how it would work in the culture and setting I am most familiar with, namely, India.

I think one essential component of a dementia-friendly community is having enough awareness and support to ensure early diagnosis so that the environment and support around the persons can be tuned to help them remain independent and retain their quality of life in spite of cognitive decline. The systems and people they interact with should be dementia aware. There should be no stigma attached to a dementia diagnosis. People should know how to interact with someone who may be disadvantaged sometimes because of dementia.

Creating a dementia-friendly environment is likely to require redesigning various services and facilities so that persons with dementia can avail them without facing problems. This is not just for medical services, but for all activities persons may engage in, whether it be dining out or shopping or interacting with tax officials or using public transport or walking in a park. For persons living independently, we need products and services so that they can continue to live independently and enjoy a good quality of life while also remaining safe.

And, of course, a dementia-friendly community also has to be friendly and supportive to the caregivers helping the person with dementia.

The wide-sweeping levels of understanding required to create a dementia-friendly community makes my mind boggle. I’ve been trying to imagine this sort of scenario in India, where awareness is so low and stigma so high that most patients are unable to have a life outside their homes because of the comments and criticism they or their families face. Typically, systems are so unfriendly that the spaces outside home are rendered inaccessible to persons who have dementia. In our country, where even caregivers hide, how often do policy makers and organizations seek the opinion of persons with dementia to understand their experience and needs? Even diagnosis is uncommon in early stages.

I’ve often found our community having large numbers of dementia-deniers, dementia-criticisers, or dementia-indifferent. The move to make a community dementia-friendly seems a major transformation; I’d be happy enough if the community around us becomes sufficiently dementia-aware. Awareness of dementia and its impact (and removal of stigma) are, to my mind, foundational elements and achieving this would itself create major improvements. We would have earlier diagnosis. Caregivers and patients would be more willing to speak up about their situation and problems, and seek assistance and support. The process of change would start.

It is interesting to note in this context that some pilot work on dementia-friendly communities has been done in India. The ARDSI National Office took up the challenge of making Cochin a dementia-friendly city, and their project won the first ADI MetLife award for the best dementia education project.

Babu Varghese of the ARDSI National Office shared information on this project at ARDSICON2013 (18th National Conference of Alzheimer’s and Related Disorders of India) in Guwahati, November 2013, where he talked of what they did and the way forward, hoping that such projects will be undertaken in more cities. Below are some slides from his presentation (reproduced with his permission):

slide showing awareness project objectivesslide showing awareness project components
slide showing strategy to build dementia friendly communitiesslide showing outcome of the dementia friendly project activities

(To view larger images of the slides, click on a slide to open the image a new window)

I’m sure anyone whose life has been touched by dementia would like to see our community become more dementia aware, more friendly, and more supportive. But major changes like this need ideas and contributions from across the board. The slides above may get us started on generating more ideas on activities to undertake and concerns to address. Let’s share them.

Another important aspect is how to create dementia-friendly environments faster. Time, effort, and resources are limited, and we need to use them effectively. Some actions affect the persons we educate/ train/ help–such actions are helpful and productive, and desirable. But some actions are more effective because they have a multiplier effect; these are actions where the persons we educate/ sensitise/ train go on to become advocates in their own right, thus helping us spread the message more rapidly. Given the massive levels of ignorance and the sheer amount of work required to overcome them, we may be best served if we focus our initial efforts on areas that help us spread awareness much more rapidly, pulling in more and more people into the cause.

Please do share any ideas or concerns as comments below (remember, you can share your thoughts anonymously if you prefer).

Edited to add: If you are concerned about dementia/ care in India and are a volunteer/ potential volunteer/ just want to know more, please do check out this page: Resources: If you want to help caregivers/ spread dementia awareness. This page includes links to several discussions on areas that individuals (or groups/ corporates) can consider for contributing their own bit for this cause. There are also several resources/ documents that can be viewed/ downloaded in this section.

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Dementia caregivers: some thoughts

Some months ago, I found myself wondering about how the term dementia caregivers is often used for the entire range of experiences and needs of caregivers trying to support persons with dementia. We have caregiver manuals, caregiver trainings, and many other resources aimed at this entity: dementia caregiver. But are all persons helping dementia patients called dementia caregivers? Are their situations and needs similar enough for the same caregiver training to benefit them all? What are the pros and cons of this label?

I’ve met a range of persons who consider themselves dementia caregivers. Some are busy with caregiving chores 36 hours a day. Some are more like supervisors for a team of hired attendants and support staff, managing the care and handling the responsibility, but not doing much of the hands-on work. Some are family members of the patient, living in the same house but not participating in the care unless there is a crisis (care is handled by a primary caregiver, and these persons are secondary caregivers). Some are long-distance caregivers living in a different city, but they make daily phone calls to talk to the person with dementia or the live-in sibling caregivers. There are male caregivers and female caregivers, caregivers who are teenagers, middle-aged, or elderly. And so on. The range of type of care and responsibility across “dementia caregivers” is wide. I’ve even met persons whose relative is living in a respite care, and they make weekly or fortnightly trips to meet them for a few hours, and they, too, consider themselves caregivers.

On the other hand, I’ve also met persons who are supporting someone with dementia for some hours a day or even full-time, but dislike the word “caregiver.” They see themselves as “family” and find the caregiver label insulting.

I’m sure there are formal definitions of the word caregiver, though perhaps not as formal or easy to apply as the word “engineer” or “doctor” or as relationships like “son” or “sister”. But persons who consider themselves caregivers don’t know or apply these formal definitions. Typically, they are close to someone with dementia, and they feel their actions and decisions affect this person, and so they consider themselves caregivers.

How important, then, is it for persons involved in the care of a person with dementia to consider themselves “caregivers”? Does it matter at all?

The way I see it, persons involved in the care of someone with dementia can handle this role and responsibility better if they have:

  • A good understanding of dementia and the way it impacts the person
  • Knowledge of various caregiving tools and techniques, such as ways to communicate, to help the person, to handle challenging behaviour, to make home empowering and safe for the person, and so on
  • A supportive environment with sufficient dementia awareness and also enough facilities and services

Regardless of whether a person supporting a dementia patient identifies with the “caregiver” label, this person can handle caregiving more easily and effectively with the help of the three things listed above. Using the “caregiver” label helps because it may help us seek knowledge and skills and services designed for caregivers. It gives an identity and enables approached others in similar situations and getting company and support. When persons providing care think of themselves as supportive family members, they may reject any tools or advice carrying the “caregiver” label and not see them as beneficial. For example, they may assume that all they need to help the patient is love and consideration, and ignore the benefit of communication techniques and tips to assist in daily activities. They may not appreciate that communicating with someone who has dementia may be different (compared to how we communicate with cognitively alert elders). They may not avail the pool of knowledge and tips that other caregivers have gathered.

One problem in my opinion is that most caregiver material is prepared for some generic caregiver, and usually does not discuss how to selectively use the material given the profile/ situation of the caregiver. For example, the needs of a youth caregiver looking after an elder with dementia would be different from that of an elderly spouse of a person with dementia. Caregivers have to sift through a caregiver manual to see what is applicable for them, and they may dismiss all advice because the first few pages they read look totally irrelevant. Also, volunteers who are supporting caregivers have to tune their advice rather than just assume the general advice will fit everyone.

Caregiver advice is definitely not a “one size fits all” and material designed for caregivers cannot be directly applicable for all caregiving situations.

In November 2013, I had the opportunity to speak at the 18th National Conference of the Alzheimer’s and Related Society of India (ARDSI), held in Guwahati (Assam) in November, 2013. The topic was “Who are we: Introducing the caregivers”, and I discussed some of the aspects I mention above. I’ve uploaded my presentation to slideshare.net and included it below. (You can also view it directly on slideshare.net at this link)

I’d like to add that caregiver material must also be tuned to the culture and country. This topic is so big that it deserves its own blog post. We know that care environments and challenges would be very different in a village in Madhya Pradesh compared to, say, a suburb of London. We need material that is easy to adjust and apply in our settings. We need material that understands our way of life, and our culture and society. Examples and case studies should be relevant for us. We need material in our Indian languages, and often this is not just a matter of translation, but of rewriting. But as I said, this is a topic by itself…and one I have written about before and will probably write about again.

Meanwhile, do feel free to share your comments below (remember, you can share your thoughts anonymously if you prefer)

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Information, creativity, fictional imperatives, hope: Considerations while using movies to understand dementia

Last month, I had the opportunity to hear the renowned filmmaker, Jahnu Barua, talk about his film, Maine Gandhi Ko Nahin Mara, a Hindi movie where Anupam Kher plays the role of a person showing dementia symptoms. (Jahnu Barua Wikipedia profile and his website). This talk was on the occasion of ARDSICON 2013, the 18th National Conference of Alzheimer’s and Related Disorders Society of India (ARDSI), held in Guwahati in November 2013.

In an earlier blog post I had commented on this film and said that I found the film to be an excellent depiction of dementia and its impact on the family, but also expressed discomfort about the final scenes and their implication. I was, therefore, very curious to hear Jahnu Baruah’s talk on his approach to the topic.

Maine Gandhi Ko Nahin Mara is the story of a retired person (played by Anupam Kher) who starts behaving very strangely. He believes he has killed Gandhi and is currently imprisoned because of that crime, and shows a range of emotions like aggression, paranoia, withdrawal, wandering, while also failing to recognize family members. The distraught family consults a doctor and gets a diagnosis of dementia/ pseudodementia. The movie ends by showing a creative solution where Kher undergoes a trial in a rigged-up courtroom scenario to help him get rid of his obsession that he killed Gandhi, supposedly a major trigger for his situation. The solution is shown to work. This aspect (of such a solution being tried and its working so dramatically) had left me very uncomfortable, as I was unaware of any research or experimentation that supports possible efficacy of such solutions.

During his talk, Jahnu Baruah talked about how he got the idea for the film (he wrote the original screenplay and he directed the film). He shared some episodes where he unwittingly interacted with persons with dementia, including one who thought he was a murderer. Intrigued, he began learning about dementia and its impact on the person and family, and met many persons in this context. He did extensive research. As he then started thinking of a movie where the protagonist has dementia, and he decided to add a dramatic solution at the end. Some excerpts of what he said (yes, I took notes):

…I extended it with my wishful thinking that such cases have to be cured. Something, at least, to minimise the pain, and then I thought of creating something, a drama…

…whether it can happen, I don’t know, but it is only my wishful thinking and I always feel there should be a way.

Jahnu Barua also shared how, after the film, someone asked him, “Do you think it is possible?” (referring to the impact of the courtroom drama on the dementia symptoms). Jahnu Barua told us that he had answered: “I’m just a film maker, not a doctor, this is just my wishful thinking.” He had a positive feeling about the film he had made, and “whether it can be done or not, that is another aspect.” As I, too, had wondered about the movie’s end but hadn’t thought of trying to contact the movie’s director, I guess I was plain lucky to hear Jahnu Barua’s clarification, 🙂

In this context, I am reminded also of another excellent movie, Thanmathra (Malayalam, my detailed comments on it available here). This movie depicted early onset dementia, and is often quoted as a very instructive movie on dementia by doctors in Kerala. However, some doctors were unhappy at some aspects of the way dementia was depicted. The director, Blessy, responded to those comments in an interview, saying: This is not a documentary, so I am allowed to take certain liberties. (full interview here)

So true. We need to repeatedly remind ourselves that movies and stories are fiction, not documentaries. Movies are creative endeavours. They depict the world as envisaged by the script writers and directors, and explore “what if” scenarios.

Again and again I hear people say, we need more movies showing dementia, almost as if we can depend on movies to spread awareness. We forget that viewers of movies don’t know enough to distinguish factual aspects from creative extensions. Movies don’t come with detailed disclaimers and notes.

If we want to spread balanced awareness about various aspects of a condition, we cannot depend solely and undiscriminatingly on fiction. We don’t substitute physics and biology classes by sci-fi movies, do we? Movies may help spread information about some aspects, but not about all aspects. They may be incomplete, non-representative, or misleading if assumed to be gospel truth. To spread awareness of dementia, we need well-made documentaries, recordings of interviews, and documented case studies. We need easy-to-read validated informational booklets. We need celebrities sharing personal struggles. We can also have stories that are specifically designed just for spreading awareness, validated by professionals. And we may need a wide range of such stories because the dementia story is not a single story. Every patient, every family, every situation is different in some aspect, and a range is needed to give a completer picture.

Of course, people will still watch movies and assume that anything depicted in them is correct, even though the film makers do not claim their movie is a medically accurate depiction and very clearly state that they are using the media to express their creative needs. Watching a well-made movie is an emotional experience, and for the three hours we sit entranced, our world is the movie world, our reality the movie reality, and the intensity makes it difficult for us to later remember that part of what we saw is just a fictional extension, a creative exploration…

Because movies showing dementia may be seen as complete, correct, and representative depictions of dementia and care situations, I made an earlier blog post where I gave detailed comments on five Indian movies showing persons with dementia. I described areas where I found the movies reasonable in their depiction of dementia, and also where I felt the movies missed on some elements or could be misleading because of the drama/ fictional elements required by the plot. This post can be seen here (Indian movies depicting dementia: some comments) and includes detailed comments on the following five movies:

Another related post is: Poor awareness and the danger of very few representations.

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Dementia: the journey of caring continues

September 2013, the month earmarked as World Alzheimer’s Month with the theme, “A Journey of Caring” has come to a close, but as caregivers know, the journey of caring continues at its 36-hours-a-day pace, day after day, month after month, year after year. As media moves over to other causes, and weary volunteers rest their hoarse throats and tired legs, let’s pause to think how deep and lasting the impact of those awareness drives and calls for supportive policies will prove to be.

Focused efforts to bring dementia and care into the limelight help, of course. Reports like the World Alzheimer’s Report 2013 may nudge some policy makers to pay more importance to dementia. Awareness talks have been held, and maybe some person will get diagnosed earlier because of them, or some relatives and friends will feel more deeply for the persons with dementia and their caregivers and extend support. Newspaper reports include lists of symptoms and names of doctors and organizations, and maybe some persons will now know whom to approach.

How long, though, does the impact of such campaigns last in the public mind? Every day is some sort of World Day, every month is some sort of World Month. Will alertness and awareness continue without sustained effort and momentum?

See, here’s the thing: if we want a paradigm shift in the status of dementia and caregiving in India, more people must understand how dementia impacts the person and the family. This understanding forms the base for any support work. Given that most people are not in cities where walks and talks were held, and that even if they were, they did not attend, all they have is a couple of paragraphs on dementia in a newspaper article once a year. Is that enough to give the public a transformative understanding of dementia (do people even read newspapers so carefully)? Will the benefits percolate enough to change the lives of caregivers? Well…

As a caregiver, I often felt isolated and misunderstood, and as a volunteer who helps other caregivers, I find many fellow dementia caregivers in India feel the same. While some lucky caregivers get a supportive environment, the vast majority do not. Here are examples of what many caregivers say about the people around them (relatives and friends and even volunteers and professionals):

  • These people, they’ve never been caregivers, they just don’t understand
  • All that advice is so impractical. It’s obvious they’ve never done any caregiving
  • I went to a doctor and he didn’t know about dementia
  • I won’t talk to volunteers any more. They just give lectures
  • Why don’t people know more? No one should have to face so much ignorance
  • “They” (“Someone”/ “The Government”) should do something about it. How can we handle all this much work without any support?

Yup, it is true that persons who have never been caregivers cannot grasp how tough caregiving is, how heart-breaking, how tiring. They do not know how isolated and unsupported many of us feel. Two paragraphs in a newspaper once a year don’t give a flash of cosmic insight.

I often chat with caregivers who feel more should be done, and even some caregivers who want to do something themselves. They are currently overwhelmed with their caregiving work, but hope to do something later.

But often other things come in the way “later”, when their care responsibilities are over. Burnout, for example. Depression. The need to move on, the expectations of their friends, relatives, and colleagues that they will put away the “negative” thoughts and “be normal.” Or just the deep sorrow associated with even the word, dementia, the face that pops up in the mind, the memories. Sometimes even crippling guilt, though there is no ground for it after such hard work for so many years. Then they also need to renew their careers and make up for the lost years. And they have to take up roles and responsibilities they had suspended–they have to be a parent, spouse, sibling, child. Resume other volunteer work they had committed to. Do that much-neglected health check-up. And they may hesitate to be seen as a dementia caregiver in a society that acknowledges neither dementia nor the role of caregiving. Family members may discourage, saying, why talk about private things? Can’t you let it alone now? They may lack the energy to work around all this or to contribute anonymously…

Some caregivers share, but often in sporadic ways, localized within safe circles of supportive friends and relatives. Sustained effort is difficult to put in. And seeing that the overall momentum is low, others who may have shared also hesitate to step forward.

As caregivers, most of us have felt that only other caregivers can understand our situation. Yet we also expect that somehow, others will start understanding us, and that some “they” should make this shift in understanding possible. But I wonder, how can we expect others to understand if we don’t talk about it? How can people grasp the challenges of caregiving if they have not experienced it and if caregivers don’t speak up and share their stories?

It’s not easy to stand up and share one’s personal experiences of being a caregiver. I know, I have done it–not just in online blogs but in face-to-face sessions with volunteers and while talking to reporters. I’ve done it again and again, and it has never been easy. I find it very hurtful to talk about some things. Sometimes I face scepticism or criticism, and that hurts. Sometimes listeners say I am “negative” without realizing that I don’t actually want to go back to those memories. A doctor once told me (in a workshop) that I was misleading people by describing the challenges of caregiving because taking care of elders was every family’s duty and people should do it without expecting anything from others. Families should not expect or need support, he told me and the audience. So yes, it hurts to talk openly, to admit to past mistakes and problems and emotional conflicts, but not speaking up seems worse because such silence could mean more caregivers will face the sort of problems I faced. And some people do listen, they ask questions, they try and understand, and that makes it worth it. Awareness grows in small steps…

I think that if more caregivers speak up, we may build the momentum needed to spread awareness. We cannot expect non-caregiver volunteers to fully explain what only we caregivers have experienced. We cannot expect others to understand if we have not opened our hearts and tried to make them understand.

One thing I have learned in these past years: there is no “they” who will set things right. We have to be the “they.” We have to say what it is like to be a caregiver.

September is over, the World Alzheimer’s Month is over. But the journey of caring continues day after day and our efforts to spread awareness must also continue.

Are you a caregiver? Have you ever felt people do not understand what it is like to be a caregiver? Maybe you’ve wished somehow that the situation would change, that non-caregivers would understand you better and know how to support you. Maybe you have wondered if you can do something to improve matters. Please use the comments below to write about what would enable caregivers like you to share your experiences, needs, and problems with non-caregivers. Maybe you can thinking of sharing that could be done in small, private circles of persons close to you. Or maybe you have some ideas on what would enable caregivers to share in public. Maybe you have faced some specific problems that stopped you from talking about your experiences. Please write about it below. You don’t need to give your name to add a comment; use your initials or use a pseudonym, whatever you feel comfortable. The comment form will ask for your email id, but the email id will not be visible to those who see your comment.

I’d love to read what you have to say.

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Let’s share experiences on early symptoms of dementia

It’s been a while since I posted, mainly because I had several ideas and was not able to decide which one to pursue, but I’ve finally picked one idea to give a try, related to a major concern area I have: simple, effective ways to share experiences.

When I talk to caregivers, they often say they’d like to share their experiences, but don’t know how to. I’ve seen some Facebook forums that are excellent mutual support communities, but their contents are not visible to the public. Dedicated bulletin boards, too, are often private. What we also need are ways where caregivers can share publicly, even if they don’t want to reveal their identity.

So I’m trying my idea here to gather your experiences on one topic. If it works, I may repeat this for other topics.

I am inviting you, family members and friends of persons with dementia, to write a comment about some changed behavior shown by a person before he/ she was diagnosed with dementia. Perhaps this was something that made you contact a doctor. Or perhaps the behavior just felt odd, and it was only much later that you wondered whether that had been an early sign of dementia.

Add your comment to this blog post. It won’t take much time. Just describe an incident in a way such that someone reading your comment can picture it. So, instead of saying, “my mother’s behavior changed”, tell us something we can imagine, like: “My mother used to love socializing and also planning the menu for visitors. Then she stopped planning menus. She even began avoiding people. Maybe she had started facing dementia type of problems.”

I know many of you have hesitated sharing in some forums because of privacy concerns. Or you didn’t know an easy way to share. If so, posting a comment below may work for you, because you don’t have to give your real and full name; use a pseudonym or give part of your name or your initials. And your email id will not be visible when your comment goes live. Your privacy is ensured when your comment is visible.

So it’s over to you…

Please remember that every shared experience matters. The few minutes you take may help some other caregiver. It may help someone realize that the behavior they are seeing may need investigation.

Here’s all you need to do: Just scroll down a bit and you’ll find the place where you can leave a reply. Share any personal experience of changed behavior of a loved one before he/ she was diagnosed with dementia–the sort of behavior that, looking back, you think might have been an early warning sign of dementia. (And don’t worry about how well you write and all that, just write whatever comes from your heart 🙂 )

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Voices of persons with dementia

This post is about the importance of hearing the voices of persons with dementia.

I think it is important to create an environment where persons with dementia feel comfortable sharing their experiences and thoughts. I think we don’t get to hear enough voices of persons with dementia. I don’t think we try hard enough to hear such voices and get authentic glimpses of what it is to live with dementia. These glimpses will help us understand how we can support persons with dementia effectively while continuing to respect their abilities, desires, and choices. But I think persons without dementia often don’t pause to wonder what having dementia could be like; we oscillate between treating dementia as a minor inconvenience and the other extreme where “he’s not there any more”, missing out on comprehending a complex situation that impacts the person in multiple ways 😦

Some months ago, I got a call from a man whose father had been diagnosed with dementia (around mid-stage according to the son). The family was finding it very difficult to provide care and keep him safe, and they were tired and frustrated. The son wanted his father to understand and accept the diagnosis. He wanted his father to admit that his memory is a problem and that he cannot do things himself, and to cooperate with the family members, not be stubborn, not wander around, forget instructions, etc.

“We already know about dementia,” he told me. “It’s my father who has to accept it.”

So I asked him to tell me about his understanding of dementia and how it could be impacting patients and to explain which part of his father’s behavior was inconsistent with the symptoms or their consequences. For example, did he really expect his father to remember and follow instructions even though he knew his father was having short-term memory problems and also facing problems in understanding things?

The son was reluctant in the beginning, but a short while later, as I pushed him with some questions, he said, I never thought of it this way, and began using a different lens for the behavior that he had earlier considered stubborn and uncooperative. He started recalling and reinterpreting episode after episode, like how his father may have felt cornered or angry when family members acted annoyed/ angry with him and issued orders. I heaved a sigh of relief. Though he sounded unhappy that he and his family would have to understand and change so many things, he had started seeing the pointlessness of having unrealistic expectations that ignored his father’s diagnosis. This was not just about an MRI showing something or a word on a prescription; his father’s life was changing, and the family would have to find different ways of interacting and being together with him.

I’ve been a caregiver myself. After my mother’s diagnosis, I did not immediately register how dementia may be impacting her. She would not talk of her problems; instead, she became more critical and demanding, and it took me time to correlate this with her possible insecurity and confusion or with her fear that she was going insane and that she would be mocked at or locked up or exploited. My sensitivity to how dementia may be making her life difficult changed the way I communicated with her. I also started thinking of ways to make her environment safer and yet interesting enough in ways she liked it. She responded, and became more peaceful. Glitches and mismatches reduced over time.

Many caregivers have told me that they became better and more considerate caregivers after they began thinking about how the person with dementia may be feeling or what difficulties they may be facing. Problems and stress reduced, and the patients seemed happier.

It’s sad that we caregivers often get so overwhelmed and absorbed in our efforts to care for the person or to make them “behave” and “remember” that we forget how dementia symptoms affect them. We expect them to understand and accept the diagnosis but forget it ourselves.

So yes, if we step back and think, imagine, feel what dementia may be like, we become more sensitive and also more effective and respectful in our approach. If we think of how it is to be confused/ disoriented, we find it obvious that we would not want people to gang up and dictate what we must do.

Yet we must not forget that doing some dementia “role play” or “imagining” is not the same as “living with dementia”.

And when I say “living with dementia”, I refer to the life of a person who has dementia. I am clarifying this because some persons include caregiving experiences in that term, assuming an equation: “living with a person who has dementia” = “living with dementia”, an equation I don’t subscribe to.

According to me, it is presumptuous for non-dementia persons to claim they “know” what the dementia experience is like. They may be professionals who understand the brain and its function/ how the damage affects it, or they may be caregivers who have seen the patient deteriorate, but that’s not the same as having dementia. Mental role play/ projection may allow us a glimpse so that we can create better solutions or improve interactions, but our understanding remains limited. We may even be off the mark.

For example, howsoever much I try to imagine myself with dementia, I cannot immerse myself into that experience because my brain/ abilities are not affected by dementia. I can only speculate/ project based on theoretical knowledge and observations. Also, I am aware all through any “role play” that I don’t have dementia, and that after this uncomfortable ten minutes or one hour I will revert to my current identity and level of abilities. Part of me remains the safe “observer” who can snap out any time. I am not facing years of inevitable deterioration and I have no real reason to be angry or desperate or despondent about life as a whole, or dementia specifically. Nor do I need the shelter of denial.

Besides, every person is different, and how can I know how someone else, with their life history, patterns of thinking and reacting, would respond to the changed brain abilities and the knowledge of the diagnosis?

But we do need to understand how patients experience dementia because, in any illness, this understanding is integral for finding ways to support patients and their caregivers.

Gathering patient voices is tough for dementia because persons with dementia may find it more challenging to observe/ interpret what is happening to them, place it in the context of the diagnosis, and articulate it. The experiences may be frightening or depressing to recall and document, or the act of describing them may require excessive effort or focus. As the underlying dementing disease further damages the brain, such sharing becomes even tougher. If unaware of dementia prior to the diagnosis, patients may not even comprehend the diagnosis, especially if they are already mid-stage/ advanced stage. They may go through a denial phase. They may prefer privacy. Depending on where they live and the people around them, they may be wary of stigma. They are probably trying to squeeze as much life as possible while they still can. Why would they spend precious time and energy sharing painful stuff, an activity that will not help them?

Fortunately, some persons with dementia do speak out in spite of all this, because they hope that their speaking up will help others later. Their courage and honesty and their commitment to the cause is something I admire.

Some persons go public with their diagnosis, celebrities in their respective fields, and that helps people realize that dementia is not some remote, improbable problem that happens to persons who were not using their brains; dementia can happen to anyone, and has happened to reputed writers, rulers of countries, even Nobel-prize winners. (Examples include Sir Terry Pratchett and Ronald Reagan)

But I’m writing about persons with dementia who share their experiences in an ongoing way in public, not once or twice in interviews, but repeatedly through blogs and sites and forums. They write books and publish newsletters and run support groups. They create sustained campaigns to help others understand dementia, they give talks, participate in seminars and forums and committees, and describe day-to-day personal experiences for months and years. They may share incidents of their fears at night, their hallucinations, and their confusion in family gatherings, their increasing inability to handle new situations, their frustration at unsupportive infrastructure or insensitive people. They also talk of what they can do, their outings, what they enjoy, and so on. They make suggestions on what helps them in interactions, and what hurts them. They help us understand what sort of dementia aware environments would empower/ support persons with dementia. Persons like Norm Mac, Rick Phelps, Dr. Richard Taylor, and others.

And in addition to those who speak up in public, we have more voices in closed forums, which provide safer places to interact and support each other.

Before I “met” these persons, I had not heard voices of persons with dementia. My mother would mention a few things once in a while, but for most part, her dementia frightened her and she preferred not to talk about her problems. I had not met anyone else who had dementia and spoke openly about it. Even now, while I have read dementia experiences from outside India, I have not read any from India. Nor am I aware of any focused effort in India to encourage persons with dementia to share their realities and incorporate their ideas in design of systems and services. If there are such initiatives, I would love to hear about them.

Of course, persons vary in their experience of dementia, and so we need more voices to get a range of first-hand experiences. Hopefully more patients will find the environment supportive enough to open up. Even so, there are limits to what we can learn because, as dementia progresses, it affects communication and the ability to analyze/ remember. For example, we may never get data to understand how persons in late stage dementia experiences their decline, though caregivers and professionals may have conjectures about it, and persons in earlier stages of dementia may project their current experience to estimate how they will feel later.

In a way this reminds me of how 24-hour home caregivers often lament about people around them (friends, relatives, colleagues, even professionals supporting dementia care): “They just don’t understand what such caregiving involves” and “only someone going through this can understand.” I guess that holds just as true for understanding what it is to live with dementia.

Here’s to hoping that we’ll hear more voices of those living with dementia, including voices from India, because experiences vary across settings and cultures. And here’s to hoping that there are more and more safe, open spaces where such valuable sharing is possible and honored.

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Some serious challenges faced in real-life dementia care situations

Over the past few years, I’ve connected with many fellow dementia caregivers and they’ve shared their personal situations with me even though it was clear that in many cases, I could do nothing but listen. While I can provide some information on dementia and caregiving tools and share some tips, I cannot help counter their major real-life problems, like when they develop back problems because of strenuous care tasks, or they exhaust savings and family silver over expenses, or when their siblings threaten to file property cases against them even as they are fully occupied looking after the person with dementia.

Looking around me, I find very little acknowledgement of several major problems that caregivers face. I mentioned this to a volunteer once, and was told that they could not help in these problems so why talk about “negative” things? Another person said such situations were “exceptions” (but had no data to support this perception). According to me, when low visibility could be driven by shame/ diffidence/ fear of being criticized or of being seen as negative, we cannot assume that the problem is rare. The problem may be common but well-hidden. Unfortunately, hidden problems don’t get attention…or solutions…

In the past I’ve tried to give visibility to real-life caregiver situations by publishing detailed interviews on my website, but I think it’s time to put together a post to acknowledge some problems that don’t get space and exposure.

Three areas that I find where caregivers face major problems are:

Severe shortage of money

I’ve talked to caregivers facing severe financial crunch. To outsiders, they appear like normal middle-class “people like us”, but in the confines of their homes they struggle for even basic expenses, their savings gone, their known sources of income down to minimal or about to stop. They don’t talk of this to others — perhaps out of privacy/ shame, or perhaps because they don’t want people to think they are angling for sympathy or money.

Read the full post here

On wrongly assuming memory loss and old age are integral to dementia, and on missed diagnosis

Around this time last year, I was in touch with a caregiver who was trying to cope with a father’s fronto-temporal dementia. In addition to watching his decline, this caregiver was also struggling with regret and frustration; the diagnosis had been delayed because senior specialists missed it, and the family had wasted several months in bewilderment and emotional flux wondering why the father had changed so much. If they had known the diagnosis earlier, they would have been able to accept and support the father’s situation better.

Over the year since this incident, I’ve been especially alert about such cases. (This caregiver’s case, incidentally, was not an isolated case, and I have blogged about similar concerns earlier). Of course, there will be missed diagnosis for any disease, but the problem is when diagnoses are missed because of systemic misinformation and stereotypes, not merely by chance. The human cost of delayed/ missed diagnosis–misunderstandings, anger, sorrow, conflicts, and no idea how to support–can tear apart a family.

In my opinion, too much of the publicity around dementia centers on Alzheimer’s and memory loss, and too much of the depiction focuses on elderly patients. Many people, including doctors, therefore assume that the early symptoms of dementia must include memory loss and that dementia hits only the elderly. So when family doctors are consulted for a fifty year old with problems like personality changes, odd social behavior or inability to name familiar objects, they may look at stress, family conflicts, and psychiatric problems. They discard even a remote possibility of dementia because “there’s no memory loss.” Such missed diagnoses can be avoided if we redesign our awareness campaigns.

Experts have increased their earlier estimates of the percentage of young onset patients and of non-AD dementias like FTD (fronto-temporal dementia/ degeneration). But existing campaigns continue using phrases like “dementia is a disease of the elderly” and “dementia is memory loss.” Many people use “dementia” and “Alzheimer’s” interchangeably. Deeply ingrained habits require motivation and effort to change, and perhaps volunteers/ professionals involved haven’t yet seen the need for that effort. But the way I see it, such (inadvertent) exclusion/ profiling contributes to poorer visibility and thus in poorer diagnosis, which in turn hides the true prevalence of the ignored segments. People don’t think “exceptions” exist, so they are not alert about them, they don’t detect it/ diagnose it, and then, because the diagnosed cases are low, people feel justified in ignoring it. It looks like a vicious circle.

Take FTD (frontotemporal dementia/ degeneration), a group of dementias that impact the frontal and temporal lobes. Read the full post here

Platitudes, shame-and-blame games, and avoidance of introspection on complex causes

I’m concerned at the way some persons associated with the field of elder/ dementia care spout platitudes and stereotypical blame/ judgments in public and social media forums. I know these people mean well, but from what I understand, such statements don’t convey anything new or useful. Worse, they may harm the situation, for example, they alienate many family caregivers who feel defensive and may hesitate to ask for information and help, assuming they will not be understood and will just be criticized as persons who lack sufficient love, duty, or culture.

I hope my statements in this blog don’t offend anyone; I am merely sharing my thoughts and opinion as a possible area to ponder on. Let me explain my concern.

Let me take platitudes first. I think platitudes are simplistic but often considered so correct and profound that they stop people from clear thinking or deeper investigation into possible causes and solutions. They have a preachy “you should” in them, but nothing helpful in the form of suggestions on related “this is how you can”. And because they are simple one-liners, they ignore many relevant aspects that affect relationships and care.

Take, for example, statements like “our parents sacrificed everything for us,” and “our parents gave us love, we should love them” or “our culture respects elders” or “we must always make our parents happy.” I’ve yet to meet anyone who disagrees with them, at least publicly. Prima facie, these seem good and moral and cultured. More important, it seems like all we need to do is love and respect and care for our parents like any good person should, and there would be no problem at all.

The reality is far more complex, both in terms of the complicated family relationships and in terms of the difficulties adult children face while handling multiple responsibilities and making compromises and choices.

Let me take just one aspect to elaborate–an implicit assumption that anyone, just by virtue of crossing an age threshold and having a child, is an unquestionable model of great parenting and selfless love.

Many of us in India have recently viewed a series on TV that talked openly of some problems usually swept under the carpet–things like female foeticide, dowry harassment and related violence/ killing, parents forcing children to marry, sexual abuse of children by elders and guardians, domestic violence. Who does these acts? Are there no elders amongst the perpetrators? And do they all die before they cross the age of sixty? The TV program provided alarming data and statistics regarding the prevalence of these problems. Though the show audience looked surprised when the data was presented, I’m willing to bet that most of them were well aware of these problems, and have seen them in their immediate family/ social circles, or even experienced them personally.

Read the full post here

Creating online dementia care material in Hindi: my experience so far

For the last few months I have been making Hindi material for supporting dementia care and uploading the material to make it available online. Here’s a short blog entry on my experience so far.

The background: Over a year ago I started worrying about the paucity of online (and print) material in Indian languages for dementia caregivers. This “worry” was active enough for me to wonder what I could do about the lack of material. My concern was spurred after someone in Madhya Pradesh contacted me – he was using Internet on his mobile and wanted material in Hindi so that he and his family could better support an early-onset dementia patient. I helped him through phone calls and by sending across some material I had. However, I felt concerned about how difficult things must be for someone like him who wanted support. Around July/ August last year I started exploring options for creating Hindi material myself. A few months later I made my first Hindi video and placed it on youtube, and in December I shared my thoughts and experiments in a 4-part blog entry (For part 1 of this series, click here: Adventures in Hindi Part 1).

Creating material in Hindi was not easy work. I did not have conventions to follow about the type of Hindi and the way dementia is explained in Hindi; I had to base my decisions on approach and style on the experience I’d had providing help in Hindi over the phone and in person, and, of course, my instinct as a caregiver and a volunteer. Typing posed its own challenges, as typing in Hindi is done using transliteration, so one has to remain alert about when this transliteration messes up spellings. Plus, of course, my Hindi needed brushing up.

One more deterrent was knowing that creating online material in Hindi was essentially a gamble. I knew people checked online for cricket scores and gossip about superstars in Hindi, but I had no idea whether people were looking online for information on dementia in Hindi. Even if there were such people, I had no idea how to let them know about my site so that they could check it out for at least some pointers to help them.

But I can be stubborn when I want to, and so once I decided to try my hand at it, I continued to create and upload stuff in Hindi, let some people know, and leave the rest to word-of-mouth, google, cross-links….

Here’s the current status of my Hindi work online: I have created a full-fledged website in Hindi on dementia care (Dementia Hindi ) and also uploaded four videos on youtube on wandering, helping patients with daily activities, communication, and understanding the relationship between dementia and Alzheimer’s (they are also combined into a convenient playlist: click here: Playlist: Hindi dementia/ care uploads). My latest video, on dementia and communication, was uploaded just a few weeks ago. Here it is:

So, what’s been my experience so far?

I’m relieved (and happy) to say that people have been visiting the Hindi website and viewing the videos. Not in droves, no, but enough for me to feel that the effort was worth it. Especially so as some visitors are from far-away cities I have no contacts in, such as Jamshedpur, Lucknow, and Indore in addition to the expected Delhi and Mumbai. Not all visitors are from India, interestingly, and apart from places like the USA and UK, I’ve also had visitors from the Nepal, Qatar, UAE and others 🙂 Some persons have even contacted me using the contact form, sending their queries in Hindi (typed using Roman script). (I responded the same way).

The videos have been viewed, too. Anyone who has checked out youtube for dementia information in Hindi would have noticed that available material (other than mine) is usually dubbed interviews, and some translated authoritative informational presentations. Overall, the list is so small it takes barely a couple of screens. So when I uploaded my videos, I had no clue whether anyone would even reach them. But of my 4 videos, 3 have been up for some months, and each of them has a viewership of over 200. Is that good enough? Is it bad? What number does one compare it with?

It is not as if there is a wide choice of Hindi material and I have a baseline to compare it with 😦

The way I see it is, this viewership is encouraging enough for me. It is far more, incidentally, than zero, which is what my viewership would have been if I had not put up the videos. Even without any direct touch with people/ publicity, even without press releases and conferences declaring the presence of this material, people reached it and read/ viewed it. And hopefully benefitted…

The beauty of online material is that once it is up and available, it remains available without additional effort, and so more and more people can view it as and when they become aware of it or get a link or locate it in a search.

My summary so far is that yes, there seem to be persons who will read material or view videos in Hindi (and possibly other Indian languages) if these were made available. I think catering to this potential audience is just not being taken as seriously as it deserves.

I’d also like to share that I sometimes meet volunteers in India who feel that there is already enough online material on dementia care and nothing more needs to be done on this front. These volunteers are often part of forums where they regularly exchange links to the same articles, recommending them to each other (not always reading them, but assuming others would benefit by doing so).

I feel these people haven’t considered a number of aspects. For example, they may not have considered whether the available material is:

  • understandable and usable by audiences in India (fitting into the cultural context)
  • in languages that people can read/ understand )
  • with links in forums such people can access )
  • accessible on the type of online platforms such audiences use )
  • accessible to people not in metros )
  • accessible to people who don’t have online access/ find it expensive)

I could expand the list into a much longer one, but I’m sure you get the point 🙂

I remember a comment one person made after he read some of the standard caregiver material he’d downloaded from one non-Indian site; he said he’d shown it to his family but they discarded it because the persons it showed were not Indians and the houses they showed were not middle-class Indian and the methods they described were not directly usable in India. (Like bathing tips that assume baths in tubs, I suspect) “We are not like these people; their ways won’t work for us,” he told me. His comment reinforced my impression that a good caregiver manual written by an Alzheimer’s support organization in some other country cannot always be used directly by all sections of people in India.

So, in my opinion, there is not enough suitable material in India given the diversity of our people, the sheer number of languages, the geographical and economic spread, the enormous awareness gap to bridge and what not. The gap between what is needed and what is available seems huge to me.

And here is my request to you, whether you are a volunteer or a caregiver who has experiences to share: if you are comfortable enough to create material in an Indian language — whether just talking of your experience, or sharing some structured material or some data — please do consider it. The online space is open and waiting for you.

Maybe the material you create or the video you make will not go viral. There may be no award to be won. There may be no appreciation/ brownie points from peers. But the one person who reaches your material could be someone whose life will be made different by reading or hearing what you have to say.

Main links referred to in this post

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Living with Dementia, awareness, images, stigma, quality of life: a perspective from India

Every September, those of us whose lives have been changed by dementia find ourselves introspecting about the environment around persons with dementia and their caregivers. We find ourselves building up hopes that in future, the dementia and care situation will have more dignity, an improved quality of life, and more support. Years of being the main caregiver for my mother has made me deeply concerned about dementia awareness and care in India, and I, too, ponder on these issues.

A few weeks ago, I saw a report that discussed how many existing “frames” used to depict dementia are negative/ unproductive and how alternate frames should be used to depict a positive picture and convey the nuances. Then, as I was still piecing together my thoughts on the matter, I realized that the theme for World Alzheimer’s Month 2012 is “Living together”. Alzheimer’s Disease International also plans to release a report on the stigma aspect. I look forward to seeing that report.

(BTW, for those who unsure of the relationship between dementia and Alzheimer’s : dementia is the name given to a group of symptoms, and Alzheimer’s Disease (AD) is the most common–but not the only–disease that causes dementia. Most dementia-related work is done under the Alzheimer’s umbrella by associations with names that include the word Alzheimer’s (but may not include the word dementia), a nomenclature that sometimes confuses and ends up excluding those non-AD dementia caregivers who assume the material/ advice will be AD specific 😦 )

Meanwhile, I’d like to share have some thoughts, mainly on how dementia/ care experiences are influenced by the culture and images around dementia, how countries differ, and some lessons for the concerned persons, especially my peers in India. These are just my personal thoughts, not an expert opinion nor a “report” based on any “study”…

…and I’d love to hear your thoughts, too.

I see persons with dementia as major stakeholders in any dementia-related strategy. We already have millions of persons with dementia who try to navigate their lives in spite of the disadvantages dementia imposes, and we have millions of caregivers who try to understand and support them (but don’t always manage to). Medicines and research are also important, of course, and must go on in parallel, but medical research cannot be the sole focus. A world without dementia is pretty far off, because hey, we have millions with dementia already here amidst us, right? Also, current medications are few, not applicable for many diseases that cause dementia. These treatments work on some persons but not others, have side-effects for some persons, and do not reverse dementia. It will take years of intense and sustained research to create enough effective and safe cures adequately tested on humans.

In the meantime, many people continue to “Live with Dementia”.

So I really like this year’s theme: Living with dementia. I like the fact that it focuses on people, on their situation and surroundings, and shows sensitivity to the discrimination and stigmas they may be facing. Living with dementia seems like a wholesome focus. Not struggling with dementia, trying to “defeat” it, or “surrendering” to it or “giving up” or being seen as “negative” or “lacking faith.” Instead, accepting what is there, working with what can be done, focusing on improving quality of life, retaining connections, leading enriched lives to the maximum possible extent.

Dementia care cannot depend just on medical support. It cannot even depend solely on the institutional infrastructure available; most of dementia care occurs in home settings. The care therefore depends a lot on the environment around it: the combination of images and stories around dementia, such as how society perceives the symptoms, the conventions for interacting with people showing such symptoms, the available body of caregiving knowledge, perception of the role of doctors and medication, and so on. Published caregiver manuals and guidelines are only a fraction of the environment around dementia care; the overall environment combines multiple factors like culture and religion, information available in articles, credibility of sources, newspaper depictions, depictions in fiction, mythology and movies, the history, and the societal conventions of how elders and people behaving strangely and differently are treated.

Oh, and also on whether that society even acknowledges such persons openly or whether it expects families to hide them away 😦

Let’s consider the dementia journey, which typically spans years, even a decade or two.

Read the full post here

Dementia prevalence, life expectancy, population pyramids, and playing around with graphs and scattered numbers; also, some sundry thoughts

I recently chanced on a newspaper article lauding Bollywood for spreading awareness on “rare” diseases, lumping in this so-called “rare” category genuinely rare diseases like progeria with widely prevalent problems like Alzheimer’s Disease. And I thought, maybe this reporter did not know about Alzheimer’s before watching “Black”, but surely we cannot call a disease rare just because we may not have heard of it!

See, poor awareness about a disease/ syndrome is not the same as low prevalence. A disease may be occurring often and remaining undiagnosed, or perhaps people do not talk about the diagnosis because there is a stigma attached to it; that does not make the disease “rare”, though awareness definitely needs to be spread.

There’s a tragedy happening when a commonly prevalent disease remains undiagnosed because of poor awareness. We add to that tragedy if we call the disease rare, because to call it “rare” diminishes alertness about a disease. Most of us may read an article on a rare disease with curiosity, but assume it is exotic and only something very few get (always “others”, never we or our close ones). Labeling something rare seems (to me) counterproductive to awareness drives.

The newspaper report I mention above started me in a rather disjointed gathering of diverse data and numbers that I have not yet managed to organize mentally, but hey, this is a blog, not a paper, so here goes…

Let’s first knock off the bundling of progeria and Alzheimer’s into one group. Wikipedia’s page on progeria informs me that there are 80 cases worldwide for progeria (1 per 8 million live births). On the other hand, the WHO and ADI report of 2012 (Dementia: A Public Health Priority) estimates dementia cases worldwide as 35.6 million (35,600,000) which is 0.5% of the world population, and most of these cases are either pure Alzheimer’s or mixed dementias (that include Alzheimer’s).

Also, on what is “rare” as a disease, here are some definitions (from this site )

  • A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
  • A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

I hope that finishes off my explanation of the error in using the “rare” label for dementia or Alzheimer’s.

Onwards, then, to other thoughts on numbers and stuff.

Read the full post here