Dementia: the journey of caring continues

September 2013, the month earmarked as World Alzheimer’s Month with the theme, “A Journey of Caring” has come to a close, but as caregivers know, the journey of caring continues at its 36-hours-a-day pace, day after day, month after month, year after year. As media moves over to other causes, and weary volunteers rest their hoarse throats and tired legs, let’s pause to think how deep and lasting the impact of those awareness drives and calls for supportive policies will prove to be.

Focused efforts to bring dementia and care into the limelight help, of course. Reports like the World Alzheimer’s Report 2013 may nudge some policy makers to pay more importance to dementia. Awareness talks have been held, and maybe some person will get diagnosed earlier because of them, or some relatives and friends will feel more deeply for the persons with dementia and their caregivers and extend support. Newspaper reports include lists of symptoms and names of doctors and organizations, and maybe some persons will now know whom to approach.

How long, though, does the impact of such campaigns last in the public mind? Every day is some sort of World Day, every month is some sort of World Month. Will alertness and awareness continue without sustained effort and momentum?

See, here’s the thing: if we want a paradigm shift in the status of dementia and caregiving in India, more people must understand how dementia impacts the person and the family. This understanding forms the base for any support work. Given that most people are not in cities where walks and talks were held, and that even if they were, they did not attend, all they have is a couple of paragraphs on dementia in a newspaper article once a year. Is that enough to give the public a transformative understanding of dementia (do people even read newspapers so carefully)? Will the benefits percolate enough to change the lives of caregivers? Well…

As a caregiver, I often felt isolated and misunderstood, and as a volunteer who helps other caregivers, I find many fellow dementia caregivers in India feel the same. While some lucky caregivers get a supportive environment, the vast majority do not. Here are examples of what many caregivers say about the people around them (relatives and friends and even volunteers and professionals):

  • These people, they’ve never been caregivers, they just don’t understand
  • All that advice is so impractical. It’s obvious they’ve never done any caregiving
  • I went to a doctor and he didn’t know about dementia
  • I won’t talk to volunteers any more. They just give lectures
  • Why don’t people know more? No one should have to face so much ignorance
  • “They” (“Someone”/ “The Government”) should do something about it. How can we handle all this much work without any support?

Yup, it is true that persons who have never been caregivers cannot grasp how tough caregiving is, how heart-breaking, how tiring. They do not know how isolated and unsupported many of us feel. Two paragraphs in a newspaper once a year don’t give a flash of cosmic insight.

I often chat with caregivers who feel more should be done, and even some caregivers who want to do something themselves. They are currently overwhelmed with their caregiving work, but hope to do something later.

But often other things come in the way “later”, when their care responsibilities are over. Burnout, for example. Depression. The need to move on, the expectations of their friends, relatives, and colleagues that they will put away the “negative” thoughts and “be normal.” Or just the deep sorrow associated with even the word, dementia, the face that pops up in the mind, the memories. Sometimes even crippling guilt, though there is no ground for it after such hard work for so many years. Then they also need to renew their careers and make up for the lost years. And they have to take up roles and responsibilities they had suspended–they have to be a parent, spouse, sibling, child. Resume other volunteer work they had committed to. Do that much-neglected health check-up. And they may hesitate to be seen as a dementia caregiver in a society that acknowledges neither dementia nor the role of caregiving. Family members may discourage, saying, why talk about private things? Can’t you let it alone now? They may lack the energy to work around all this or to contribute anonymously…

Some caregivers share, but often in sporadic ways, localized within safe circles of supportive friends and relatives. Sustained effort is difficult to put in. And seeing that the overall momentum is low, others who may have shared also hesitate to step forward.

As caregivers, most of us have felt that only other caregivers can understand our situation. Yet we also expect that somehow, others will start understanding us, and that some “they” should make this shift in understanding possible. But I wonder, how can we expect others to understand if we don’t talk about it? How can people grasp the challenges of caregiving if they have not experienced it and if caregivers don’t speak up and share their stories?

It’s not easy to stand up and share one’s personal experiences of being a caregiver. I know, I have done it–not just in online blogs but in face-to-face sessions with volunteers and while talking to reporters. I’ve done it again and again, and it has never been easy. I find it very hurtful to talk about some things. Sometimes I face scepticism or criticism, and that hurts. Sometimes listeners say I am “negative” without realizing that I don’t actually want to go back to those memories. A doctor once told me (in a workshop) that I was misleading people by describing the challenges of caregiving because taking care of elders was every family’s duty and people should do it without expecting anything from others. Families should not expect or need support, he told me and the audience. So yes, it hurts to talk openly, to admit to past mistakes and problems and emotional conflicts, but not speaking up seems worse because such silence could mean more caregivers will face the sort of problems I faced. And some people do listen, they ask questions, they try and understand, and that makes it worth it. Awareness grows in small steps…

I think that if more caregivers speak up, we may build the momentum needed to spread awareness. We cannot expect non-caregiver volunteers to fully explain what only we caregivers have experienced. We cannot expect others to understand if we have not opened our hearts and tried to make them understand.

One thing I have learned in these past years: there is no “they” who will set things right. We have to be the “they.” We have to say what it is like to be a caregiver.

September is over, the World Alzheimer’s Month is over. But the journey of caring continues day after day and our efforts to spread awareness must also continue.

Are you a caregiver? Have you ever felt people do not understand what it is like to be a caregiver? Maybe you’ve wished somehow that the situation would change, that non-caregivers would understand you better and know how to support you. Maybe you have wondered if you can do something to improve matters. Please use the comments below to write about what would enable caregivers like you to share your experiences, needs, and problems with non-caregivers. Maybe you can thinking of sharing that could be done in small, private circles of persons close to you. Or maybe you have some ideas on what would enable caregivers to share in public. Maybe you have faced some specific problems that stopped you from talking about your experiences. Please write about it below. You don’t need to give your name to add a comment; use your initials or use a pseudonym, whatever you feel comfortable. The comment form will ask for your email id, but the email id will not be visible to those who see your comment.

I’d love to read what you have to say.

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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