Dementia Home Care in India: a framework to understand it, and suggestions for caregivers and volunteers

As an ex-caregiver who tries to help other caregivers, I continue to be dismayed by how unprepared and unsupported families are through years of exhausting and heart-breaking dementia caregiving. Many families never get a diagnosis. Even those who get a diagnosis rarely get a realistic picture of how much they need to plan, what changes they will have to make in their lives, and how absent systemic support systems are.

Again and again, I find families clueless about the deterioration dementia brings. They do not know that dementia will keep worsening and that the person will become almost fully dependent. They have not registered that they will be using more and more of their time and money and energy for care. They often think dementia as memory problems; they do not know the person’s abilities will keep reducing. This will go on for years, and during this they will see the person deteriorate in heart-breaking ways. They start this journey unprepared, with no one holding their hands.

Almost all dementia care in India happens at home. Advice given to caregivers assumes many things about what families can afford and the time they have for caregiving. Families do not get a realistic picture for effective planning. They remain unaware of many potential problems. Possibly the advisers themselves do not understand the overwhelming and prolonged nature of care. And advisers do not appreciate that 24×7 home care differs from a day job of a trained professional who is part of a multi-disciplinary team. So a lot of their well-meaning advice is impractical because, though good in itself, the advice does not fit the family’s care context.

The fact is, dementia awareness and support in India is so poor that family caregivers have to create their own group of supporters. They have to plan for dementia caregiving and also for self-care. They have to plan finances for a marathon stretch of increased costs and reduced incomes. They have to see how to take out the required time and energy for years of care. They have to prepare for the emotional journey of caring and their stress and fatigue. They have to appreciate the limitations of the systems and support around them, and have realistic expectations. And all such planning has to be done early, because they will not be able to do much planning once they are submerged in intense caregiving.

Home care for someone with dementia is not a simple short-duration activity. Care happens for several years, and in the context of the culture and society and the family’s other obligations and desires. Many long-term decisions are made. We need to view dementia home care as part of this framework in order to understand and plan it better. We have to appreciate the limitations and then seek practical answers.

I have been mulling over this for a while now, and recently I put together my thoughts on such a framework along with some suggestions for caregivers and volunteers. Alas, there are far too many problems, and very few solutions or suggestions. I am not sure how much my presentation will help viewers, but it will surely give them something to think about. Maybe it will prompt families to derive practical approaches for their care situations. Maybe volunteers will find better ways to support families. You can view the presentation below, or view the presentation directly at Slideshare if the player below does not load properly.

Also, some similar posts and pages, and some resources:

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Ideas to support dementia care in India

As a caregiver for many years, I have shared my personal experiences and related musings about dementia caregiving through over 200 blog posts (see them here). I now work actively in the dementia domain (my work and how I support). I have also created resources for volunteers in the dementia domain.

Persons who want to support dementia care in India need helpful and practical projects they can take up. These projects should match their inclination, time, energy, and skills. This post is about my effort to create a set of potential projects they can consider.

First, some background. Many persons feel they should do something for caregivers. Unfortunately, very few are able to convert their intention and enthusiasm into action. Often, when they realize how much needs to be done, they become unsure about what specific actions can help. They want to make a difference, but get discouraged or intimidated. They then get busy in other work, or use their energy for some other cause that seems easier to contribute to.

A lot needs to be done to support families coping with dementia in India. Some of these are major initiatives, such as at the policy and Governmental levels. But individuals, NGOs, professionals, and organizations can also do many things, even with limited time, energy, and funds.

Small, clear, well-thought actions can make a real difference to at least some families. Such actions are practical, and also give great satisfaction. On the other hand, volunteers can get discouraged if they aim too high because they cannot pin down how exactly to achieve that goal. They are not able to get visible results that match their high expectations of success. So they feel overwhelmed and helpless and eventually give up.

I am therefore collecting and documenting a set of do-able ideas suitable for varied types of potential contributors. I will make this document/ presentation available online. I hope this document will provide existing and prospective volunteers at least some ideas that appeal to them and that fit their energy, funds, availability, and personality.

The tentative format for each idea (suggestions are welcome) is:

  • Scope and brief description of the idea
  • The problem it solves
  • Who may find this idea suitable to implement
  • Background knowledge needed
  • Elements to plan for
  • Examples and references of similar projects implemented
  • Resources to contact (for data/ support/ networking/ potential associates)

Please note that I know that we need broad visions and missions and nation-level strategies and actions. We need to “spread awareness,” “support caregivers,” “ensure early detection of dementia,” and “make dementia a national priority” and so on. These visions and missions require major actions by well-networked, well-informed persons who have the required time, energy, funds, etc.

But for my current project, I am not looking at lofty intentions and large national or international scopes. I seek easy-to-pick-up ideas that can be done at a more modest and practical level. Ideas that persons reading this blog can think about doing.

The persons/ entities who may find these ideas useful are expected to be:

  • Persons who want to donate small or moderate amounts of money effectively but don’t want to get pulled into too much evaluation or work
  • Persons looking for areas where their organization can fund or participate in projects (such as, projects under “social responsibility”)
  • Small to medium sized NGOs interested in eldercare or dementia domain
  • Family caregivers who want others to not suffer (“my experience should not go waste”) but don’t have much time and are concerned about confidentiality of participation
  • Concerned persons with some spare time and energy, who want to use their existing skills (communication, technology, etc.)
  • Concerned persons who are interested in creative work (art, plays, etc.)
  • Students, artists, and others who want to complete a small, useful project in dementia and may want this to be part of their college work/ add to their resume

Some examples of the types of ideas (to show how I am keeping the scope of my ideas simple and practical):

  • Fund the translation of a dementia information brochure from one language to another, including funding the translation and the cost of experts validating that translation.
  • Fund a local hospital’s neurology/ psychiatry department so that they can host monthly support group meetings
  • Arrange an inter-generational sensitization trip, such as a trip of school kids to a local dementia centre
  • Share your caregiving experience through comments on sites where you can share without violating your privacy (maybe anonymously). Decide to do so once a week (or month, whatever suits you).

Basically, I am starting a project to collect and document dementia-related ideas that are useful, doable, and give a sense of completion and satisfaction. Ideas you can pick up one at a time, do and complete satisfactorily, and either stop or pick up one more idea.

What I am doing: I am using my notes as well as published reports and papers (national and international) to get a starting set of ideas. I am trying to recognize do-able components of available ideas, and then select what seems important, useful, and practical to do. I am gathering data on successful initiatives and prototypes to add to this idea list.

Here is what I need from you: data and ideas. These include:

  • Send me data that can help me in my research: published papers, studies, news/ accounts of initiatives that worked (or failed, and why), examples of prototypes of caregiver interventions, and so on
  • Send ideas you consider practical to do. I’m sure anyone concerned about dementia has many big and many small ideas; send me ideas that you think fit my request. If in doubt, send the idea anyway.
  • Send any other suggestions.

I hope you will help.

Think of something useful that can be done even with limited energy and resources, even with constraints. Consider specific ideas where you can imagine someone achieving an end result in a short time frame. Then add a comment below (you don’t have to give your name if you prefer anonymity). Even sharing such ideas as comments may help others who are looking for project ideas. Of course, you can also email comments to me (see my contact information here).

Please share this post with anyone you think may be interested.

Thank you for reading.

(For your reference, here are the links referred to above):

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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…

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Dementia and caregiving: More material in Hindi

Six years ago, I started sharing my caregiving experiences online as a form of catharsis, but this soon morphed into taking active steps to spread awareness about dementia and sharing suggestions/ information that could help dementia caregivers in India. The main reason I pushed myself to do what I could was the sheer paucity of material that Indian caregivers could relate to–material written assuming an Indian context.

Lack of material in Hindi was one of my concern areas. I tried involving others into creation of Hindi material, but no one stepped up to actually doing work (Alas, material doesn’t get created by clicking “like” on Facebook). I tried using paid translation services, but their translation was too literal and full of grammar and spelling mistakes and misleading phrases. So I began preparing material in Hindi myself–I created a full-fledged Hindi website on dementia and care, added a couple of Hindi videos to my youtube channel, and uploaded some Hindi stuff on my slideshare.net.

In the last few months, I put in another burst of work to prepare more material in Hindi. Here’s what I created:

A Hindi blog on dementia and care: While I’d initiated a Hindi blog a while ago, I had not been making posts in it. In May this year, I began posting more often on this blog, beginning with a topic I considered very important: Dementia names in Hindi डिमेंशिया को हिंदी में क्या कहते हैं. The blog now has 16 published posts, and I’m comfortable enough to now announce it here.

The blog is at डिमेंशिया (मनोभ्रंश) और सम्बंधित देखभाल.

A short, simple Hindi note on caregiving: This was the Hindi version of a simple caregiving note I’d written earlier. The Hindi note is uploaded on slideshare.net. You can view it at slideshare or in the player below.

Two Hindi videos on my personal experiences as a caregiver: One activity lying on my to-do list for a while was sharing my personal caregiving experiences in Hindi. I’d already created such videos in English. Talking about my personal caregiving experience is always difficult, and it took me a lot of rallying around to finally do the recording in Hindi. It was tough and draining. I finally selected out two segments of what I taped and uploaded it on my personal youtube channel at swapnawrites. (This is different from my other youtube channel, dementiacarenotes which contains videos with suggestions/ tips/ information for other caregivers, and is associated with my websites Dementia Care Notes/ Dementia Hindi).

Here’s the Hindi video where I share my mother’s dementia journey

(if the player does not load, visit this youtube link directly)

Here’s the Hindi video where I share my personal experiences and observations as a dementia caregiver

(if the player does not load, visit this youtube link directly)

So that’s what I’ve been doing to add my bit to Hindi material on dementia and caregiving. I am not fluent enough in other Indian languages to prepare material in them, and I hope others, fluent in various Indian languages, will consider sharing information and suggestions in them. I consider it a pity that most material in other Indian languages is material that was written for and by persons in countries other than India, because that material assumes a cultural context and level of support very different from what we face here, and hence not always practical for us here.

A request: If you are concerned about reaching audiences that read/ understand Hindi, please do check out the above. If you think they can be useful to others, please consider telling people about them, linking to them from your websites and blogs, and sharing them on social media. Thanks!

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For those concerned about dementia and caregiving in India

The poor state of dementia awareness and caregiver support in India continues to alarm me, but I also fear that many persons who can improve things are not doing so because they think that the required actions will be taken by others at some grand, country-wide level, often by the government or major NGOs.

I think that is wishful thinking and not dependable.

Choosing to make one area a national priority means choosing to pay less importance to some other area. Realistically speaking, not everything can be a priority. In a country like India, struggling with multiple basic problems in areas like health, education, law and order, infrastructure, etcetera, I have no basis to expect that dementia will be made a “national priority”. Surely child mortality, primary health care, basic sanitation, farmer support, poverty eradication, reducing school drop outs, and many, many basic causes are already contending for, and deserve more national attention, funds, and priority.

I keep encountering persons who expect the government to solve the problems faced by dementia caregivers. They expect the government to ensure hospital care and better diagnosis, set up multiple respite cares and day cares and memory clinics, have special wards in hospitals, etc. Alas, it’s not going to happen in a hurry. Dementia activists may talk themselves hoarse labelling dementia as an “epidemic” but I’m sure activists in other domains–domains like AIDS, cancer, diabetes, heart problems, child prostitution, malnutrition, and so many others–have their own catchy phrases which are as alarming or more. They, too, have compelling and visible statistics to support the use of such phrases–and often have more persuasive pictures, case studies, and statistics than what dementia experts can churn out.

In my opinion, it may be reasonable to expect and lobby for some basics that facilitate dementia diagnosis and care, like including dementia-related criteria in guidelines/ checklists for senior citizen related services/ homes, including dementia in curriculums of professions like medicine, nursing, adding dementia in illnesses for which concessions are available, subsidizing adult diapers.

But it seems unrealistic to expect the government to set up special, well-equipped day care and respite care centres for dementia when girl students are dropping out of school because schools have no basic safety or even toilets. And someone even suggested to me that the Government should set up “dementia villages” of the sort shown in these articles: Inside an Amazing Village and Wikipedia entry on Hogewey. Well, I can’t even begin to explain how unrealistic and unfair that expectation is…

So to me, this means that for anything beyond broad directives/ policies related to dementia, we have to depend on NGOs and on what we, as individuals and corporates can do. And we need to acknowledge that the number of persons willing to do work is very low, and therefore being effective and focused in our efforts becomes very important. My contention remains that the root to improvement is awareness. Ideally, I’d have liked some large, funded and committed organization to work on a well-designed awareness campaign, but I don’t want to succumb to the temptation of abdicating responsibility and waiting for the “they” to do this. Let’s all do our bit anyway. Maybe things will pick up.

Another thing that worries me is the danger of expending effort in areas that are not yet relevant in India.

The problem is that some of us, even those who know ground realities, get very attracted by discussions in esoteric circles of dementia activists from developed countries. We forget how much foundational work needs to be done in India before we can afford lofty dreams. We forget that, in India, we have yet to establish a foundational understanding of dementia, and our overall quality of life and social support and welfare schemes is not good. How can we justify aiming for a quality of life of dementia-affected families that is grander than what is normally found around us?

Sure, concepts like “dementia villages” and “dementia-friendly communities” are progressive, the “in” thing, and provide a more satisfying area of work compared to mundane problems like drafting caregiver material and making it available in multiple Indian languages. But can already-scarce experts afford to spend time and effort on serious and detailed discussions on such advanced topics when we have not yet discussed how to ensure that doctors know how to diagnose dementia?

Persons discussing futuristic and currently-inapplicable-in-India concepts often point out that the discussions will also result in more awareness and after some initial discussions, they will adapt the concepts for India and their work will include awareness type of basic areas. My concern is that most initiatives lose steam and run out of funds very soon. We therefore cannot squander initial momentum on discussions that will not result in improvements to those suffering from the pathetic state of affairs.

From what I have seen, this digression into currently-irrelevant concepts is a consequence of three factors:

  • Volunteers/ experts are often part of a vibrant world-wide community that discusses advanced applications and ideal situations with impressive and inspiring quality-of-life criteria, and hence these volunteers/ experts get drawn into professionally enriching dialogs and heart-warming concepts
  • They don’t pause to think that taking up one project of this sort also means not being able to take up some other project they could have done instead, and
  • They do not have sufficient, day-to-day contact with actual caregivers and patients and therefore are not personally inconvenienced by the ground-realities. They don’t, at an inner, emotional level, appreciate the day-to-day struggles of families coping with dementia. This distance means they do not experience an urgency to tackle the most pressing and immediately relevant aspects first.

Awareness is so poor that there is no way to tap the bulk of actual, hands-on caregivers. Besides, caregivers come in various stripes; the ones who most need help are not visible, not tapped, not participating in most dialogues. Patients who need the most help are the ones locked up in houses because of social stigma, or who remain undiagnosed or are labelled as crazy and shunned. So where are their voices, their concerns, their perspectives on what they need most and fastest? Where can we find persons diagnosed early enough to have insight into their dementia who may share their realities so that we can know what “friendliness” means to someone who actually has dementia? Don’t their opinions matter?

Yet I am not sure that locating persons with dementia and their hands-on family caregivers, and then listening to them, is considered as something to do before deciding what needs to be done first. I’m not even sure it gets due importance while actually working on grander projects.

Here’s what I feel: we need to get real about the situation in India if we want changes to benefit persons who need help.

We need to accept what we can expect from the government. We also need to accept that many things are pointless and unfair to expect. We need to honestly acknowledge the real status of families touched by dementia, across all economic and social status, across all geographical locations–not just upper middle class English-speaking families living in larger cities in some states.

Furthermore, we need to set aside expectations driven by international conventions and not let our priorities get warped.

Let me get this right: I am not saying there is anything intrinsically wrong about working on advanced concepts. I am saying, when resources are so scarce, then anything we pick up has an opportunity cost: something else that those resources (experts, time, corporate funds and goodwill) could have been used for remains undone. That is why we have to be careful in what we choose. If we had more volunteers, more experts and abundant resources we could have taken on projects of all sorts–both for providing basic dementia support, and for discussing advanced concepts that are not currently usable. But we have a severe shortage of people and resources in the dementia domain. We don’t have the foundation for advanced and ambitious projects like a “dementia-friendly community.”

Let’s at least reach a state when, if a family approaches a doctor, odds are that they get appropriate guidance. Or when a patient is taken to an emergency room, staff understands how unnerving this all must be to someone with dementia and knows how to be considerate. Let’s make information available in Indian languages. The list of such basics is a long one.

There’s another aspect: each contribution can help.

With so much that needs to be done, surely each concerned person can find some way to contribute? Especially as we know that there is no “they” who will wave a magic wand. Even as individuals, we can help others and add to the overall betterment of the dementia care environment. For example, we can help a caregiver by running some errands or providing a respite. We can talk more openly about dementia and improve awareness, making dementia and its care challenges visible. We can generally be more proactive and participative when sharing information and ideas. And maybe some of us have the time and energy to take up larger projects, work more visibly, share thoughts and ideas and aim for making a bigger difference.

So if you are concerned about dementia and caregiving in India, please think of what you can do for people whose lives have been, or may be touched by dementia. They will have a smoother ride because of your actions. And it’s not as if you are safe from dementia in the future; your life may be touched by it again. Actions you take today based on your concern could even help you in the future.

Related post: I had shared my thoughts on the importance of dementia awareness earlier, here: Need for well-designed dementia awareness campaigns

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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 (read about the Torbay Dementia Action Alliance).

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: some examples are Creating Dementia Friendly Communities (Ireland), UK Health Dept’s page on dementia friendly communities, Innovations in Dementia CIC.

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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Dementia day care centres: criteria caregivers use to avail such facilities

I’ve often bemoaned the fact that we have very few dementia-specific facilities in India, but it’s probably time to write about the flip side of the problem: that some dementia day care centres remain underutilized and volunteers from such centres say they don’t understand why families hesitate to use day care facilities.

Before I continue, in case you are unsure what a dementia day care facility in India may be like, here are some interviews I did a couple of years ago (the information may be different for other centres and may have changed even for the centre these interviews refer to): Care in a dementia day care centre: a social worker explains and Taking dementia patients for outings: a volunteer shares his experience.

I’m writing this post to gather input from caregivers in India about their thoughts on using dementia day care centre facilities for the persons they are caring for. My questions: What criteria have you used/ could you use to decide whether or not to use a dementia day care centre? What are the pros and cons as you see them? How would you evaluate a centre, or its suitability for the person you look after? Would the location matter? Would transport matter? What sort of facilities do you expect in the facility? What sort of things there would make you so uncomfortable that you won’t think of using it? how would you decide whether the facility would suit the person with dementia? What sort of payment would seem reasonable to you? Are there other factors (like comments by family/ neighbors, etc.) that may affect your decision?

And, at a more basic level, do you think a dementia day care centre can add any value to you and/ or the person with dementia who you care for?

(Of course, if you have used a day care and have comments on what helped and what didn’t, that would be great to know, too)

I must admit here that I did not use a day care facility for my mother; my decision was based on my mother’s needs and personality and not so much related to the facility I evaluated. On the other hand, I know families that have been very happy using day care centres. I also know families that withdrew the person after a while, for various reasons. I’ll probably write more about these in a later post; right now, I would like to gather more information from other caregivers on their opinions and thoughts about day care facilities.

We need to share thoughts and data on this because we want dementia-specific facilities. If we want day care centres, but existing centres are not good enough, our data may help improve existing services or set up more suitable ones. And even if the services we want are different (like respite care or caregiver training or supply of trained attendants), we must remember that if entrepreneurs get discouraged by the response to their day care centre, they may decide against offering other services which we want.

Looking forward to your comments (Remember, you can post anonymously. You can also write directly to me).

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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

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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Resources for dementia care volunteers now available online

In January this year, during my blogfest, one work area I identified was: Design a simple and structured way for dementia care volunteers in India to access relevant documents and resources created by me without their needing to contact me..

Over these past few years, while trying to help other caregivers and during my interactions with like-minded volunteers/ caregivers, I have  been preparing various documents and wishlists; I have always shared these openly with anyone who contacted me and seemed interested. These persons could use the ideas and information that helped, and ignore the rest. They could also give me feedback that I could use to improve the documents.

Around December last year, I realized that my existing modality of sharing was not sturdy and effective because it depended on chance contacts and was time-intensive. I must also admit that, being a social recluse, I am intimidated at the very thought of scaling up my availability for person-to-person contact.

I finally created a special section aimed specifically at sharing resources with volunteers working in dementia care in India: Resources for volunteers helping caregivers.

Here’s my intention: whenever I create a document that I think could be of use to other volunteers, I will add it to this section, either in an existing page of the section, or by creating a new page. This could be a wishlist of areas that need work, a document explaining dementia home care in India, or a document with my ideas on how to actually provide a service. Whenever I create a blog entry that is specifically relevant (in my opinion) to volunteers (and is not just a hodgepodge of ideas) I will add a link to the appropriate page in this section. I am leaving comments open for people to add their feedback or other links they find useful.

This section contains my views, opinions, documents. I am not an expert in any way, not even someone with an NGO or a trust or any qualifications as a volunteer. I am just a caregiver who developed a commitment to help other caregivers. I am just someone trying to do whatever I can, and share whatever I think and do, as honestly as I dare to. I undertake no implicit or explicit guarantees that the documents I am sharing are relevant or will help; I am creating this section because I strongly felt I need a space for such document sharing. How others use them is for them to see. Of course, I welcome feedback.

Take, for example, the setting up of support groups for caregivers. We so desperately need such groups. Around the middle of last year, I had drafted a document for creating caregiver support groups for a volunteer body, and then, a few months later, amended that to fit “dementia” caregiver groups for another person keen to set up a group. I know of at least three other persons who have wondered whether they can set up a support group, and what would be involved. There may be many more persons thinking of this. Now, the draft document I have created is available for anyone to read and use as fit, send me feedback, whatever. If someone sends me more ideas, I’ll amend the draft as suitable.

The section is intended for volunteers who want to equip themselves to understand and help dementia caregivers in India, and includes discussions on the status of dementia care in India and the impact of culture and context.

Pleave have a look or share the link with anyone who you think may be interested. Thank you!

[And that’s one item off my to-do list 🙂 ]

(Edited in February 2013: When this post was written, the resource section had been created on my personal site. I have now shifted the section to this blog as part of a consolidation exercise, so that all my experience and opinion-sharing related to dementia is now at one location. The links in the post have been corrected to reflect the correct links)


Edited in 2014 to add: The current pages in this section are as listed below:

Resources: If you want to help caregivers/ spread dementia awareness


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Hindi website for dementia caregivers in India (40+ pages): an announcement

This blog entry is to share that I have created a 40+ page Hindi website for caregivers of dementia patients in India. Below, I explain the scope and purpose of the site and put forth my request to all blog readers.

The website:

The site is at http://dementiahindi.com. Topics covered include dementia, caregiving for persons with dementia, related resources available, videos, interviews, and contact information. Everything on the site addresses the caregiver, keeping in mind what a dementia caregiver (as per my understanding) may need to know, or what may help a caregiver. The cultural context is India, and so the examples and the assumptions of system/ social support are based on what is found in India.

The material is written in conversational, normal Hindi (Sanskritized words have been avoided). There are pictures and cartoons, with blurbs in Hindi. As most available online material is in English, many of the referred links to go English sites, but I have also given links to all online Hindi material on dementia/ care that I am aware of (which is pathetically low, and therefore I created this site). The material is a loose (not exact) translation of the English site, Dementia Care Notes, and has a more Indian idiomatic flavour which is possible because it is in Hindi.

The purpose:

As I am not aware of any extensive Hindi site on such a topic, my attempt in creating this site is to break out of the chicken-egg situation of demand-supply related to Hindi sites. People don’t create sites because no one visits them, and people do not look for them because there are none…that is the sort of problem I have tried to step out of.

The http://dementiahindi.com site is created:

  • For people who prefer to read in Hindi
  • For people who prefer English but need to show family members stuff written in Hindi (they can print the pages/ show them online)
  • For volunteers who are too busy to/ unable to support caregivers who need support in Hindi (they can pass the link/ print the pages)
  • For volunteers who want to prepare material in Hindi (they can contact me so that we can work out how they can use this material as input)
  • For myself, as a starting point for more work I may do in Hindi (like preparing videos)
  • To provide an online presence in Hindi that may make a Hindi-speaking caregiver approach me for help, – with the confidence that they can talk to me in Hindi
  • For the curious who may surf by and read the site/ use it to reach other online material available in Hindi

Future Plans:

These are not ambitious, and consist of:

  • In an on-going way, responding to anyone who contacts me through this site
  • Accepting and processing any suggestions/ corrections based on my time and energy levels
  • Updating the site for more Hindi material I may prepare (prepared as per my time and energy levels)
  • Updating the site to provide links to other material in Hindi that may be available or accessible

My Request to You:

Please spread the word about this site.

I sometimes get emails asking me, “Can I pass on this link to someone I know?” and I’d like to state it clearly that the very purpose of creating such a site is that it should reach people who may be helped by it, so please, please spread the word; you do not need to ask me to pass the link around. There are many people in India who are not all that comfortable with English (though they may not say so), and would prefer material in Hindi if they could get it. Please share this link also with people who may get helped, with people who may know people who may get helped, with people who may know people who may know people who need help…you get the picture.

Social media shares are good. But social media shares last just till the next bunch of tweets and status updates fill up a couple of scroll-downs, so please also consider adding the link to your blog/ site if you think it could help, if you think it fits…

As far as I know, there are no established conventions for how people locate Hindi material on the web. Different people use different ways, and most assume there will be no material. Searches don’t work that well, most people do not use Hindi transliteration on their computers, the Hindi aggregator sites (that were supposed to collate information on Hindi websites) keep going defunct.

So the only way I know to spread the word is “word of mouth” or “word of mouse”. Have a look at the site, and if you think it suitable, please spread the word.

Please help me by giving me any more information you have on online Hindi material on dementia care. I will check it out, and include it as suitable.

Please help me out through feedback on the site, especially any awkward sentences you note, any place where the language is not conversational enough, or there are spelling mistakes. And, of course, other suggestions. I am not an expert, and I have done this alone, and I would appreciate your input.

At the end:

There is, of course, stuff I’d love to share about how I got into this, why, and how I finally got over my diffidence and took the steps needed to create this site, but they are probably worth an entry of their own and that can wait.

For now, let me just end this post by reiterating: The website http://dementiahindi.com is now a complete unit, with 40+ pages, aiming at helping caregivers of dementia patients in India. It is before you. Please consider the site announced. If you have the time and energy, please have a look.

If you see any mistakes, or if you have any suggestions, please, please let me know. The beauty of online work is that it can be changed, improved. Email me or use my contact form (both available at the contact page). I did this work alone, but now it is out there, and I am not alone. I welcome comments.

If you think the site could help someone, please help spread the word. Mention it wherever you see fit–social media (Facebook, twitter, whatever), your blog or site. If you think it can help anyone, please use “word of mouth”, “word of mouse”, whatever.

Thank you.

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Reducing caregiver isolation, working from home, using coworking

Recently, I shared my own experience of isolation and loss of social skills as I became more and more occupied with caregiving, and then I suggested that caregivers be alert about this possibility and guard against it. A few days later, I happened to talk to a caregiver and she described what she planned to remain connected to people even when she worked from home. I asked her whether I can share her idea, and she not only agreed, she even said that such sharing helps people and she also may pick up ideas if others share their ideas (hint, hint, to any of you who has ideas) 🙂

Anyway, so this caregiver looks after a dependent parent who has dementia and is immobile, but can be safely left alone for a few hours. The caregiver works from home, executing freelance assignments that she does on her computer and emails. She was once very active socially and her enforced seclusion dampens her spirit, so here is what she is considering:

This caregiver has an “office room” to work from. Now she will add some tables and chairs to this room to make it suitable for multiple users. She will then invite friends who work from home to use her office room as their offices. Each person will work on her own assignments while sharing the same office space and in the companionable presence of others, so that they all feel like working more and don’t succumb to distractions or feel lonely. The caregiver plans to put out flasks of tea or coffee (for which she may ask her friends to pool money, or maybe not, she hasn’t decided).

Read the full post here

Trained attendants and respite care for dementia: Sharing suggestions for volunteers from India

Yesterday, I shared my observations related to availability and quality of trained attendants and respite care for dementia in India (Trained Attendants and Respite Care for dementia: Observations from India); today, I am setting down some thoughts on what concerned agencies and volunteers can do right away to make a difference in a way that can scale up fast. I’m no policy expert, but hey, desperate people get wild ideas, and here are mine.

For those trying to help caregivers, the pathetic state of available support is disheartening. Day after day, one is forced to break the sad news to overwhelmed caregivers and I’ve seen many concerned persons getting distressed that they cannot help the way the callers (or email-writers) obviously expect them to do. I’ve felt down myself, both as a caregiver and a volunteer.

Some volunteers begin considering setting up agencies or respite care homes themselves. They redirect energy, time, and resources into trying to set up whatever is needed to train a batch of attendants, or start planning a specialized dementia care home. Often, many of these persons realize midway this is just so much work, and doing this means they cannot do anything else. They feel they are spending all their energy for something that may benefit at most 10 or 20 families, and wonder whether this is more important than what they were doing earlier. Also, being committed to a cause and passionate about it does not naturally equip one to run a full-fledged establishment for fulltime care. These volunteers/ organizations then give up, or start something that fizzles out, having lost valuable time and energy (and sometimes goodwill) along the way.

Here is what I think:

Ideally, there would be this huge nodal body that sets up gazillions of agencies that supply excellent trained attendants at very affordable prices, and also creates heaps of day cares and respite cares so that no dementia patient remains unsupported.

But that does not seem feasible, at least in the short run 🙂

We need help now. We need something to start providing relief soon, in a widespread way. We cannot depend solely on the actions of existing dementia care volunteers, already a small and over-stretched community. In addition to increasing the community of persons committed to help, we must get others interested in creating appropriate facilities.

Read the full post here