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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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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Caring for someone with dementia

In November last year, a friend asked me to write a 700 word article on dementia caregiving for a souvenir. Though I’ve written extensively about dementia and related caregiving, the imposed word-limit forced me to weigh each sentence, each word. What should I include? What to exclude? While I didn’t manage to say all I wanted, I realized that a one-pager overview of a vast topic can be a relief after the rambling posts I typically make on this blog. So here’s the article, unchanged (I confess that I was sorely tempted to expand it, but I desisted 🙂 ). Note that the article was written assuming very poor dementia awareness, as the intended readers were based in India.

Caring for someone with dementia

by Swapna Kishore

Family members, friends, and colleagues often want to support persons with dementia, but are unsure how to proceed. Below is a brief overview of dementia caregiving.

The first step is to understand the difficulties dementia patients face.

Most people don’t appreciate how much dementia affects the patient because they think it is normal for elders to have reduced brain functionality and memory loss. They think dementia problems are similar to the way most elders misplace keys or get slower at calculations.

The fact is, because of the cognitive decline in dementia, patients find it difficult to do even normal, simple activities. Amma skips lunch because she doesn’t remember how to heat the meal her daughter left for her. Grandfather gets cheated of his lifetime savings because he no longer understands financial transactions. Papa gets lost because he can’t remember where he lives. Grandmother has no idea how to open the bathroom tap. But family members assume such behaviour is laziness or carelessness because they don’t realise these problems are caused by dementia. When Amma withdraws, they say she is ‘giving up’ and any frustration or agitation is considered meanness.

However, once people understand how dementia affects the patient, they can find ways to help the patients.

Realistic expectations are essential for effective caregiving.

Families often hope treatment will make patients recover completely from dementia, and do not understand the limitations of medicines. They also think that if patients try harder, they will become normal.

Such unrealistic expectations create problems.

For example, family members insist that patients should remember things correctly and work faster. They ‘correct’ mistakes, criticise, get angry, or show disappointment. This confuses and distresses patients who are facing genuine problems and already trying their best. They become slower or may get agitated, which, in turn, upsets family members even more. This unhappy circle ends only when families accept the dementia reality and adjust their care approach based on realistic expectations.

Caregivers can look for ways to improve patient safety and fulfilment.

Once caregivers appreciate the realities of dementia, they are able to find suitable caregiving approaches.

Consider problems of communicating with the patient. Dementia patients may forget where they are and not even recognise family members. They get distracted easily. If caregivers understand these problems, they’ll know that typical communication tips can help: face the patient while talking, use eye-to-eye contact, use simple words and short sentences, speak clearly and calmly, and avoid complicated questions. If names confuse patients, point out objects. These and other suggestions can vastly improve communication.

Or consider ways to change the home. Signs pointing to the bathroom can help confused patients. Patients may feel safer walking around if clutter and hanging wires are removed. Grab bars may help. Suitable home adaptations make it easier for patients to do their tasks.

Better dementia understanding can also explain sudden changes, like the patient becoming inactive one day. If caregivers know that patients often can’t explain when they are unwell, they may notice the patient’s fever or sprained ankle.

Basically, patient behaviour provides clues that can be used to find solutions.

For dementia patients, every day is full of difficult tasks, and a predictable daily routine reduces stress. But like everyone, they like fun and want to feel useful. Caregivers who add suitable games and simple chores to the patient’s daily routine often find that patients are more cheerful and willing to do things.

Care has to be person-centric

Though there are similarities across patients, dementia affects individuals differently in terms of type and severity of damage in the brain, and how this worsens over time. Care must be adjusted according to the patient’s changing abilities, personality, past history, health, likes and dislikes, skills, interests, family, social environment, etc.

Dementia care involves heavy responsibility and hard work. Also, it is heart-breaking to see someone decline. Caregivers get exhausted, make mistakes, and may feel guilty, resentful, or depressed. Yet they do experience joy, especially when focusing on what patients can still do. Those fulfilling moments give caregivers the energy to do the work and accept the inevitable decline.

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Need for well-designed dementia awareness campaigns

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

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

Benefits of increased awareness

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

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

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

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

Awareness campaigns are an effective use of limited resources

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Creating Dementia Friendly Communities: some thoughts

I first heard of “dementia-friendly community” because of the work of Norman McNamara (more popularly known as Norm Mac, or just Norm). Norm was diagnosed with dementia some years ago and has, in addition with coping with his dementia problems, worked tirelessly to spread awareness of dementia and to make sure that inputs from persons with dementia are heard and valued by policy makers and others working in the field of dementia. He has also been working to make Torbay, UK, a dementia-friendly community (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 and included it below. (You can also view it directly on 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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On wrongly assuming memory loss and old age are integral to dementia, and on missed diagnosis

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Read the full post here

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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Human costs of concealing a dementia diagnosis

Sometimes, even after a doctor has confirmed that a patient has an irreversible dementia, the doctor may not tell the patient or family about it, thinking there is no cure, so nothing can be done, why upset the family unnecessarily? The note below expresses my view on this. (I am not talking of situations where diagnosis is delayed because some doctors do not know enough about dementia, which is a vast topic of a different nature)

Doctors sometimes debate on whether or not they should inform patients / their families that the patient has an irreversible dementia. Some feel that since there is no cure for dementia there is no point in communicating the diagnosis (they feel it would be disheartening, or pointless). Others are confused on what is right (to tell or not tell).

Here’s a fact worth considering: knowing a diagnosis doesn’t just enable a patient to get medical treatment; it also helps everyone concerned to see the patient’s behaviour and deterioration in the proper context and make changes to improve the overall quality of life.

The fact is that the patient may be worried about what is happening to his/ her memory, abilities, emotions; the patient may be scared, isolated, angry, unable to cope.

The fact is that the behaviour of dementia patients, if not understood, often also bewilders and hurts people around the patient. Families undergo emotional pain and conflict. They sometimes even split up or fight legal cases because the patient misunderstands/ forgets things, says wrong things, flings accusations, takes wrong decisions, gets violent, or even acts in an uninhibited or “vulgar” way. Such painful situations could have been avoided if family members had realized that the behaviour was because of a dementing disease. Family fortunes are sometimes squandered because families, unaware of the dementia, let the patient take major decisions.

Essentially, not knowing that the patient has dementia means that families continue their old ways of interacting with the patient, which often makes problems worse for everyone concerned.

Many families feel very upset when they realize later that their doctor had known about, but chosen to conceal the dementia diagnosis. Family members deeply regret years wasted in bitterness and bewilderment which knowledge about dementia would have reduced; they continue to feel guilt about things they said or didn’t say, things they did or didn’t do, for years after the patient’s demise.

On the other hand, families aware of the diagnosis are able to change their ways of talking to and helping the patient. They are able to arrange things so that they and the patient can enjoy what is still possible rather than only notice the reduction in capabilities. All this improves the quality of life of the patient and the family, even if the underlying dementing disease cannot be cured.

Families aware of the diagnosis are also able to re-arrange their lives to minimize the impact of dementia caregiving on their other responsibilities. They can plan for the caregiving required across years by rearranging business and personal commitments, relocating their home, changing jobs, deciding how to share work with siblings, etc.

Then, of course, let us consider the patients’ right to know, especially as they may be worried by what is happening to them. A lot of patients diagnosed early have talked of the sheer relief of knowing that there was a reason they were facing the problems, that merely knowing a diagnosis reduces their stress and makes them more capable of handling things, even if there was no medical relief possible for their form of dementia. They feel better off knowing the diagnosis though they may not always remember it (thanks to dementia).

I believe the debate on whether doctors should reveal the dementia diagnosis is not confined to India, it exists in other countries too. Perhaps some doctors don’t understand the human cost of their silence about the diagnosis; to these doctors, if there is no medicine, there is no point telling people of the problem. Their concern centres on only the medical aspect, and they view the debate of whether to tell or not as “academic.”

Currently, even if the doctor has figured out that a patient has an irreversible form of dementia, the doctor may or may not tell the family; the concealing or revealing of the diagnosis depends on the individual doctor’s conviction about revealing the diagnosis, and how knowledgeable and sensitive the doctor is about problems beyond the ones medicines can solve. The problems of living with dementia, so to say. Not just the academic listing of symptoms, but the facing of the problems in real life. Currently, go to one doctor and you will get appropriate information and support; go to another, and you may hear something wishy-washy about how such problems happen to some people when they age.

Ideally, it would be great if patients and families were confident of some sort of minimal level of information and support from doctors, regardless of the doctor’s personal convictions.

From what I remember, some decades ago, there was a similar reluctance amongst many doctors regarding revealing a “cancer” diagnosis. That has changed, possibly because cancer has been “de-demonized”.

Regarding dementia: maybe if many patients and families describe how knowing the diagnosis improved their quality of life significantly (even though dementia cannot be cured), more doctors will appreciate that patients and families are stakeholders who need to know what is happening. They may evolve appropriate ways to convey the diagnosis and related information, discuss these, refine them. And maybe even create, as a community, suitable guidance that all doctors will conform to.

Definitely the patients and famililes would be better off for it.

This is my opinion; I’d love to hear your views.

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Sharing my personal experiences and thoughts on youtube

Whenever a caregiver says he or she wants to do something about dementia care, my standard suggestion is that they share their experience, not just the rosy parts, but the challenges. Often such sharing is difficult when one has moved on and found one’s caregiving pace and peace; it opens wounds, painful memories one would rather set aside, but there are persons who would benefit by knowing that they are not alone in their agony phase, and that it is possible to come out of it. So I suggest talking, blogging, putting up stuff on Youtube.

So when, a few days ago, I chanced upon a recording of an interview I’d give in June 2009, I figured I should do something about sharing it. I’m already used to sharing my caregiver experiences through my blog, through face-to-face caregiver sharing sessions, through newspaper interviews.

But this was a video recording, and it was almost three years old, and as I struggled to figure out format conversions, and added “question” slides and other stuff to edit it and structure it and make it youtube-ready, I found myself strangely moved, to a point I was paralyzed by grief for some hours.

You see, in this interview, I’d been at the best phase of my caregiving. My mother clearly enjoyed my company, the attendant looking after her was affectionate and competent, and although I had made a lot of compromises in the rest of my life to provide my mother what I call an “empowering” environment, they all seemed so worth it.

In one segment of the interview, I even commented on how my mother’s dementia was not progressing much.
This was June 2009, yeah.

And just four months later after some physical decline in walking and some other setbacks, my mother was bedridden. By October 2009, my mother was completely bedridden, unable to get up for anything (and yes, that means not getting up even to go to the toilet).

I sounded so happy with the current state in the interview. Trying to edit it and collate it was an intense reminder, and it hurt to remember those days. I was suddenly missing those story-telling sessions, those games. But life moves on, and I guess one should grab one’s happiness when it happens, because I’m not sure one can ever say how rapidly the situation may decline. My mother’s just recovering from one bout of chest congestion, she continues to sleep bulk of the time, and it is only very seldom that she shows any cognizance about my touch or voice.

Ah well. Anyway, here it is, 14 minutes of a time capsule. (This was recorded in the days when I was just starting to get active as a volunteer and as someone talking about awareness and all that) :

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

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About doctors, hospitals, healthcare, and a dementia care support wishlist

One thing that concerns me deeply, both as a caregiver and as someone interacting with many other caregivers, is that luck plays a big role in the quality of support received from doctors and various medical support systems. Many times, alas, it is bad luck.

There are dedicated, compassionate, and well-informed doctors who support family caregivers through timely diagnosis, sensitive handling of the explanation, and appropriate medication with due attention towards possible side-effects. They also guide the families to various support systems and counselors who can then help the families care for the patient without the caregivers becoming basket-case burnouts themselves. We also have GPs (General Practitioners) and family doctors who notice the early symptoms in a patient and alert the family about the need to check for dementia, and direct them to appropriate specialists.

But this is rare.

The Dementia India Report 2010 admits that awareness of dementia is low even amongst the medical community and support providers; some excerpts:

…there is no special emphasis on dementia diagnosis and management in the training of healthcare professionals

There is no structured training on the recognition and management of dementia at any level of the health service

Health care services remain insensitive to and do not provide the much needed information and support for carers and family members

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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).

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Priorities and scope of care

A few weeks ago, I had a long phone chat with a caregiver that confirmed what I suspected: some caregivers feel that persons around them only keep thinking of what more the caregivers can do for the patient, without sparing a thought for the wellbeing of the caregiver.

This caregiver, let me call him/ her Emm, is handling fulltime support of a parent with dementia, alongside the responsibility of running the home and earning the money to do so. When Emm first contacted me, the parent (who had several medical problems) had not yet been diagnosed with dementia, but Emm had chanced upon my website and realized that the parent’s behavioral oddities could indicate dementia. Over several long calls, we discussed multiple aspects of caregiving and future planning. A formal diagnosis was obtained after a few months, and Emm’s self-education on dementia proved helpful in extracting more support from the consulting doctors than they were voluntarily offering. Emm also joined multiple forums to connect with volunteers and caregivers. Caregiving has subsequently stabilized.

In our last catch-up-and-chat call, Emm expressed disinterest in discussing dementia or knowing more about it. “I do not want to think about dementia” were the exact words. The parent was stable, seemingly content, clean, fed, with all medical checkups up-to-date. Emm wanted to use this stable period to work hard and build savings. Having already read up enough on dementia, Emm was confident about being able to recognize if the symptoms were worsening, and would contact me or others for help at that stage. “I hope you don’t mind if I don’t like to talk about dementia,” Emm told me.

I’m not exactly fond of talking about dementia myself, I said 🙂

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