Voices of persons with dementia

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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