Young today, a dementia caregiver tomorrow; let us involve the stakeholders

There is something very energizing about seeing young people buzzing around having rip-roaring fun, doing things, getting all charged up about causes–there is so much energy there that it inspires (except if one has to match it, because then it intimidates). But I think we underestimate what the young of today can do, and don’t give them the information they need to improve their tomorrow.

I refer, of course, to informing youngsters about some of the harsh facts about dementia and how it will hit them if they get yanked out of their lives to become caregivers :)

Youngsters are often involved in elder care through various schemes, typically involving improving the quality of life of elders through intergenerational activities, or doing some chores for elder care facilities. There are “adopt a granny” type of projects, and sometimes school kids may also be taken to spend an afternoon at an old age home, or do a craft project for some grandparent-aged persons, and so on. Play periods are fixed where the old and young finger-paint together, and some such intergenerational activities are held with dementia patients, too.

Such interactions are fun, and also useful in a larger sense, especially if they move beyond the hour of fun and make children more sensitive and equipped to interact with grandparents (both those with dementia and those without).

But most such activities treat the youngsters as young people, and not as persons who are the citizens and voters and, most important, the dementia caregivers of tomorrow. This type of involvement falls under the umbrella of love, duty, culture and respect, and even “social work.” Some weeks ago, I was talking to someone in her late twenties/ early thirties, and she felt that getting youth more interested would depend on the ability of the organizers to arrange a certificate or some career building grade or something at the end of it. That youngsters see such activities as something they do for others, like social work, and while they may enjoy it and be enthusiastic about it, they see themselves more as “givers” than as “stakeholders.”

I think we are missing out something big here.

Look at some other causes, like the environment, the plastic issue, pollution issues and crackers, the corruption issues. Youngsters get involved in these because they are concerned (or so we hope) about the future of the world in which they will live. If pollution grows too much, they see their future as being impacted. So they get involved, and while they may not all move mountains, their involvement is not a part of duty towards others, but for their own future lives and as stakeholders.

Take dementia. We have frightening figures, we talk of how, with increased longevity, the prevalence of dementia will also increase, and also, how with the breakup of the joint family system, the support will increasingly have to be provided by nuclear family units which have fewer people and hence, less of a buffer to absorb the caregiving load. It is these youngsters of today who will be impacted, right? This young boy or girl whom we now send to play with a granny and who sees that as part fun and part chore, may two or three decades later have to opt out of a career to become a dementia caregiver…

…And that person, not so young now, may wonder why nothing was done to stem the dementia problem growth decades ago.

Just as we tell the youngsters that if they don’t stop plastic pollution, the world will be unlivable some decades later, shouldn’t we also be engaging them about dementia? Shouldn’t we let their generation know that there is a medical problem for which there is no prevention, no cure, no treatment even, and that, further, there is also no support facility to help them take care of the patient?

Suppose the youngsters learn about dementia. Suppose they realize it could constrict their future unless they act today. Young people have a right to know the facts because dementia could impact their future. That knowledge gives them a chance to lodge their protest or raise their voice for this the way some of them do for plastic and corruption. The youth may then choose to bring their energy and intellect to careers that will change the dementia landscape

Of course not all kids will bother; not all adults bother, either. But maybe some children will get involved and do something or lobby more, or make career choices that impact the course of research or care support. Maybe a youngster who is today ignorant about dementia has the potential to create the wonder medicine that we are waiting for; let us at least tell her about it so that she may get inspired or concerned and change her career direction accordingly.

I think it is our role and responsibility to inform the young about the situation and the risks involved, and then let them decide whether this cause is worth taking up. Let us not be (unintentionally) patronizing towards them by thinking this is too complex or depressing for them or that they will not want to know or will not be able to make a difference.

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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://dementia-care-notes.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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