Helping professionals appreciate the realities of dementia home care

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Dementia and caregiving: More material in Hindi

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

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

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

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

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

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

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

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

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

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

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

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

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

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For those concerned about dementia and caregiving in India

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

I think that is wishful thinking and not dependable.

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

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

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

But it seems unrealistic to expect the government to set up special, well-equipped day care and respite care centres for dementia when girl students are dropping out of school because schools have no basic safety or even toilets. And as for the person who suggested to me that the Government should set up “dementia villages” of the sort shown here and here, 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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Voluntary body donation: some thoughts in response to queries I get

These last few days I’ve been updating my FAQ page on body/ brain/ organ donation and I thought it’s perhaps time to also share my thoughts and observations based on the my conversations with prospective donors.

One thing I notice repeatedly is a significant communication gap between the person who wants to donate his/ her body and the family members who will actually have to do the required donation and sign the consent forms.

One example of a gap is when the prospective donor does not want the family to decide how to dispose the body after death. These donors believe that if they have signed up for donor programs, family members will be obliged to respect their wishes. Some such donors even consider a donation enrolment as equivalent of a “will.” Alas, they are mistaken. There is no legal obligation on the family members to donate a body just because the donor wanted this to be done. The next-of-kin decide how the body may be disposed; they select the way (cremation, burial, donation) and rituals depending on what they want (unless the death is “unnatural”, which then involves police and autopsies and stuff).

A couple of persons I talked to were not even on talking terms with immediate family members. They would not inform them of their travel plans or health problems or anything else, and had not told them about their desire to donate their bodies. They were so sure that their intention to donate was good enough to ensure donation happens that they hadn’t paused to think that it was this alienated family that would handle their body disposal after they died. The dead person does not exist any more, and cannot dispose off his own body.

Some donors tell the family what they want, but the family is not convinced. The topic is not discussed much, because everyone is uncomfortable talking about it. Even if the immediate family is almost convinced, the topic is not broached with the larger familial or social circle. Donors don’t realize that this is likely to result in a failure to donate, because once they die, their immediate family members will face social pressure and pressure from relatives, and may find it easier to just opt for traditional modes of body disposal.

One amazing thing I noticed is that in many families, the elderly person is keen to donate, but faces a lot of protest from the children, even children who are scientists and doctors and who theoretically accept that body donation is good. These children cannot imagine Appa or Amma’s body being donated; they see it as disrespect (students cutting a body of a loved one) or hurtful (imagine taking out the eyes), but have no problem with seeing the body being buried or being burned on a pyre. This emotional barrier to donation makes discussion difficult. In some cases, the prospective donors persist till family members come around and agree that they will donate. In other instances, when the children get emotional and agitated, the parents stop talking about the donation.

I recently attended a function organized by one hospital for its registered voluntary body donors. The hall was full of elderly persons who had signed up as donors, but I saw hardly any middle-aged children who would probably have to coordinate/ perform the actual donation. I wondered why these elders were not accompanied by the children if the commitment to donate was a family commitment. It was a Sunday, so attending should not have been a problem. Were these elders living away from their children (empty nests are common now), or were the children not involved enough to come along, or did the elders not even inform them about the function? Wouldn’t this affect the probability of the donation actually happening?

Another thing I have noticed when talking to many prospective donors is that they (and their families) have not spent much time figuring out the nitty-gritties that have to be done to actually donate the body. They remain unclear about who has to be contacted after death, how to get the required certificate from the doctor in time, etc. It’s a morbid topic, sure. Somehow they assume (or hope?) that getting a donor card means the donation will be easy to do and don’t figure out the procedure to be followed as soon as the death occurs (or as soon as the family realizes the person is dead). The confusion and distress that kicks in when someone dies is not factored into the planning. Most donors and their families assume that the hospitals or doctors will guide the family through the donation process when the time comes. They don’t realize that body donation is so rare that most doctors don’t have much experience in it and will not be able to help. It was realization of such information gaps that had led me to create the FAQ page last year (this is the page I have now updated to improve clarity).

Thinking about and planning for body donation takes effort and commitment, because in our current setting, it is far simpler to use the conventional modes of cremation or burial. So a prospective donor’s efforts cannot stop after registering as a donor. Much needs to be done to make sure that this intention converts into an actual donation after death occurs. This includes ensuring that family members are convinced about the donation, and so are persons in the relatives/ social circles. Family members will need to act promptly after the death to coordinate the body donation, which means they need to be very conversant with the procedure and also have the required information readily accessible. Their commitment to actually donate the body must be reinforced periodically, so that it is not forgotten when the need arises. And additionally, planning may require steps like involving the family doctor and securing their commitment, and so on.

Oh, and my updated FAQ page is here: FAQ on Organ/ Body/ Brain/ Eye Donation. It is rather long, but hopefully it covers all areas where people need information. Do let me know if you have any suggestions.

P.S.: In the post above, the discussion on post-death procedures is in the context of normal death (cardiac death). For the other form of death, brain death, the person is already under the care of the team of doctors who declare the person brain dead and will guide the family through the process of organ donation. In brain death cases, organs can be donated if the family is comfortable donating organs of a person who is still on some sort of life support; the procedure is not the challenge as the person is already being tended to in a hospital that is equipped for accepting organs for transplant.

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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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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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