Building capacity in people who are losing capacity

Screen Shot 2016-05-08 at 8.40.43 AMThere are those who would say it is simply not possible to build capacity in people who are losing capacity, and yet, there are many people with intellectual disabilities, or changed cognitive capacity including people with dementia, who have learned new things, and who have learned to do things differently  in order to continue to function.

It is people in these groups whom people like Dr Norman Doidge have been researching, and I am glad I was a fan of his and other positive reactions to dementia and other illnesses, before the pundits who spoke as he was a freak. He was considered to be ‘non scientific’ by many medical specialists and science as well, and is now proving neuro plasticity and the brains ability to change and to heal.

My neuro-physiotherapist believes in it too! But my own medical doctors were and probably still are, not remotely interested in my brain healing itself or in it’s capacity to create new pathways, or even acknowledge that it has very likely changed in ways that have allowed me to function.  What a disservice they are doing their other patients with dementia or changed cognitive capacity caused by other things, who could do with some support to live with changing cognitive capacity. Most of their stroke patients get support, and this came long before there was strong evidence for it. They continue to prefer to dish up the Prescribed Disengagement® as nauseum…

There was even a time when everyone thought the Earth was flat, and the oh so brave sailors, sailed towards the edge!

“When Columbus lived, people thought that the earth was flat. They believed the Atlantic Ocean to be filled with monsters large enough to devour their ships, and with fearful waterfalls over which their frail vessels would plunge to destruction. Columbus had to fight these foolish beliefs in order to get men to sail with him. He felt sure the earth was round.”
Emma Miler Bolenius, American Schoolbook Author, 1919

Strong leaders want to build capacity in others and support them to become leaders, and that is what I want most for the members of DAI. We don’t want one or two people to be the super stars, we want as many members as humanly possible to stand up and speak for themselves, which is after all, their most basic of human rights. We want hundreds of leaders, people who simply want to live, not only die from dementia. I may currently be their leader, in that I am the Chair and CEO, but I am one of many who simply wants to live, as we advocate and support others with dementia to do the same.

Let’s hope our health care professionals soon start to realise there is capacity and yes, even leadership to be built and supported, even in people with dementia or other cognitive impairment. Through developing leaders, we are developing capacity, as well as teaching people how to live, and not only die from dementia.

16 thoughts on “Building capacity in people who are losing capacity

  1. Thank you Kate with DAI help I have learned to become a public speaker in my area, and fight for services,one thing I never thought I’d be able to do before I had to dementia

  2. Kate – This is possibly the most important message you could ever convey to the DAI community.

    While we, as members, enjoy the privilege of having found in DAI an organization – nay, a FAMILY in which we can express ourselves freely, find hope and joy again, be liked and needed again, essentially “fit in” and love life again… we must also embrace responsibilities that any member of a family must assume. (Personally, I’ve neglected doing the dishes lately, so if someone will volunteer to wash, well, I’ll dry, ok? Ha!)

    Seriously, though, one of the unique and enjoyable qualities I’ve found in DAI is the strength we are able to give each other, and in so doing, discover our own, inner strength. I’m sure everyone has felt what it’s like to find confidence again after a support group meeting, to want to make plans again after a conference, to realize it’s possible to power through bad times after they’re over, because we know we’re not in it alone. We’ve got Family. We’ve got DAI.

    So we must return part of our strength to keep the Family organization itself healthy. From what I see, members are great at supporting each other as individuals. What I’d like to learn, is how to support the Family better (especially the mothership!) since it’s an ever-growing body of individuals.

    So on this Mother’s Day 2016, let’s not only celebrate DAI’s founding mothers (and fathers, of course – no gender bias here!), let’s also promise to bring whatever strengths we members have to meet the Family’s needs. So… what does that mean?

    Well, maybe a few of us can advocate, write and organize quietly behind the scenes. Others have a powerful public speaking voice (and great hair!) to stand up for our rights. A few are the glue that holds together the social, financial, emotional, technical, practical unique fabric of DAI. Some are physically strong and can set things up and take charge. Some are detail-oriented or artistic. Luckily, we also have people who are good at taking out the trash! Whatever we can offer, here we are. We are Family.

    • Thanks for joining this particular conversation dear Mary… working behind the scenes is equally as important as on the front line, and leaders are in all ranks, not just those on the public arena. Everyone is important, and everything we all do. xox

  3. While Dementia still seems to be more progressive than reversible, I too believe that building capacity is possible and certainly more desirable than becoming less. By supporting, keeping expectations reasonable yet high, by compensating, by being creative a person diagnosed with dementia can continue to grow. As one example: Gregory, midway through his dementia, began painting and was highly successful and productive in his new art. It brought him great joy as it did to those around him. He had three shows, painted over 200 pieces in 7 years, sold almost all of them, and told Nancy, his friend-teacher-mentor, that she changed his life. We called her the “Art Angel!”

  4. Kate, thank you for highlighting capacity building and neuro plasticity on your blog. As a former community organizer and lifetime activist, I particularly applaud your public recognition that our world needs more leaders.

  5. Well said Kate I learnt to swim last year me a person with dementia. Was it my fear of the water that had prevented me from swimming before I don’t know, what I do know is learning to swim has helped me keep fit, mix with other people with and without dementia and I think has helped me stay well both physically and mentally. I think, this is only my thought that once given a diagnosis most people think it’s only a downward road. Which if you are helped and stimulated isn’t . The more professionals who realise this as we shout from the roof tops the better. Yes we may need help, yes we may deteriorate, but we are still able to function maybe a little slowly but function we do. Keep on fighting Kate xxx

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