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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A personal update: two years after my mother’s death

It is two years since my mother’s death; I guess it is time for a personal update.

When, for years, I was immersed in caregiving, I’d not considered what would happen after my mother’s death–on how I would feel, and how I would adjust to the loss and my changed role and situation. I hadn’t expected the process to be so slow and fraught with confusion. Over these last two years, I have gone through various phases of emotional upheaval and readjustment, and I’ve shared some of this process in previous posts (here, (here, here, here, and here). The process of adjustment continues.

Two years later, my mother is still a presence in my mind every day. Even if I am not actively thinking of her, I have a faint, dull awareness of her, a sort of feeling something’s missing in my life, a feeling that has taken me time to get used to, but which I accept.

I end up thinking more specifically about her quite often, too. I remember things she did for me, or arguments we had, or things we shared, and it has an air of reminiscence, gentle, sometimes amusing or heart-warming, sometimes mildly sad. These memories are reasonably matter-of-fact, and while not always easy, they seem a part of my past and my personality like many other things.

But sometimes I get yanked into memories that plunge me into a sharp sense of loss. It’s like a sore spot touched suddenly, a spot a splinter lies buried under, unknown to me. The emotion leaves me gasping, exhausted. It takes an effort to emerge from, spanning for several minutes, even hours, and often, though I know the feeling will subside, I still have to ride the wave and cannot rush the pace at which it subsides. These emotional plunges, though declining in intensity and duration, occur often enough for me to dread them.

I am aware now of the sort of events that trigger these disorienting episodes.

Meeting my mother’s peer group, for example, still reminds me of my loss and of the loss she suffered because of her dementia. Sure, life deals out different fates to different people, everyone has problems and setbacks, and even if she hadn’t got dementia, other problems would have happened. Yet I need several deep breaths to compose myself again.

The major trigger for such plunges is related to my continued work for dementia caregivers.

A significant part of my work involves maintaining my online resources for dementia caregivers in India (I have websites/ videos at Dementia Care Notes , Dementia Hindi, youtube videos on dementia and caregiving, and caregiving-related personal interviews). For this work, I keep myself up-to-date with recent discussions and studies on dementia care and also stay on the lookout for India-specific services and facilities. Many caregivers and other concerned persons contact me through my sites or this blog, and I try to share my experiences and ideas with them. During all this work, I am actively thinking of dementia and how it impacts the person and families, and naturally, this is emotionally and mentally tied with my experiences as both caregiver and volunteer.

For most part, while doing such volunteer work, I have sufficient insight and distance to productively use what I have experienced and studied. But sometimes a sentence/ factoid I read or an incident someone relates connects me a hurtful memory or emotion inside me and disturbs me with an unexpected intensity. Some days ago, I was talking to another caregiver alumnus who tries to help other caregivers and spread awareness by sharing personal caregiving anecdotes, and she told me that she experiences similar plunges and pain.

Here’s the thing: caregiver conversations are needed. It is only by openly talking about such things that we can spread awareness and improve the situation for persons with dementia and their carers. For the large part, at least in India, dementia is untalked about and invisible, and caregiver stories remain unspoken and unheard. Dementia awareness remains poor, misinformation remains rampant, and support systems remain non-existent. The number of people who need help is growing faster than sporadic attempts to add support services. This overall status saddens me on some days, and frustrates and angers me on others. It makes me want to withdraw on some days, while on other days, it energizes me to do what I can. I know that sharing my caregiving experiences can be helpful to others — my mother’s death does not mean that my caregiver experiences have become irrelevant — and I wish I were not hampered by hurtful memories.

I continue to search for the optimal level of involvement in dementia care, hoping to find a level where I am effective and productive, and also safe from burnout or depression. It would definitely be easier to do what I want to do if my mother’s memories were by-and-large peaceful, benignly swinging between my experiencing a gentle nostalgia and sensing her supportive and affectionate presence. It seems, though, that time heals rather slowly, and part of the delay is because I continue work in this domain (thus extending and reinforcing my identification with a caregiver identity and related experiences and memories).

When I was a caregiver, my work was determined by factors beyond my control and I knew an end would come. But in volunteer work, I have to set the pace and take the decisions.

Regarding other fronts: I continue to extend myself, experiment, and redefine my understanding of what I want to do with respect to non-dementia-related areas. This adds to some variety and enrichment (and fatigue :) ) I have already realized that travel and sightseeing are pleasurable to me only in small doses. For most part, I prefer simple long walks or curling up with my Kindle. I have resumed professional writing but not yet attempted any ambitious creative writing that requires a larger mental canvas; this will have to wait till I become better at juggling time.

I’ve shared on this blog earlier that caregiving was very isolating for me, and that I find it difficult to resume a social life, given that I am, anyway, an introvert. In the past few months, I’ve attempted a miniscule degree of socializing…well, not socializing per se, but at least trying not to be an outright recluse. That has been energy intensive, but I’ve peeped out of my shell and started saying hello, and risking mistakes on this front.

I could say I’m progressing one smile at a time :)

And I have been learning some new topics.

I’ve always been a curious person. For the last several months, I’ve been enrolling in free online courses (MOOCs) on a diverse range of topics. I felt like this kid let loose in a candy store, and I sort of overdid it, completing around 20 courses in nine months, and peeking in and attending parts of many more. I enjoyed the concentration and rigor some of the courses required, but yeah, the courses do require time and energy and I am whittling down the courses to a less obsessed level.

So yes, this is where I am two years down the line after my mother passed on: taking moderate steps of venturing out into the unknown, trying to find a sane place between integrating and drawing upon memories of my mother while not getting sucked into them. Looking for peace. Looking for balance. Still figuring out how to pace my dementia care support work so that I can sustain it without draining myself. I suspect this is not too different in essence from folks around me, because everyone has to do some such balancing act, for whatever situations and challenges life throws to them.

And BTW, I have not been posting as regularly to this blog as I used to earlier; this blog already has over 200 entries, and while I have many ideas for new blog entries, actual writing may be sporadic as I balance other work/ commitments, including ongoing dementia care work. You can always contact me if you want.

Related Blog Posts

My online dementia resources (in addition to this blog)

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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, Building dementia-friendly communities: A priority for everyone (downloadable here) that 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 here, here, here, here.

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):


(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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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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