Distinctiveness of Younger Onset Dementia
Elizabeth Peel in Conversation with Larry Gardiner
In the third of a series of six blog posts I talk with Larry Gardiner. Larry describes himself as a Change Agent, Co-producer, Citizen Advocate, Gentle Irritant. I interviewed Larry who shared with me his experiences and views – or rants as he puts it – on numerous topics: the diagnostic process; human potential, being and engaging in the world; the distinctiveness of younger onset dementia; the importance of communication, interaction and meaningful engagement; the “bigger picture” and how people with dementia are represented and treated in society; his views on research; and on anti-psychotic medication.
This particular ‘diablog’ focuses on the theme of the distinctiveness of younger onset dementia. Larry has been supported by, and worked with, the specialist charity YoungDementia UK (YDUK). More information about dementias which occur before the age of 65, and the support and services YDUK provide can be found on their website.
Liz: Do you think some of your, I guess approach or philosophy to this is distinct as a younger person to somebody who is older?
Larry: Um, yeah I think part of it is. Yeah, that’s a really good question. I think that um, young onset dementia has got some characteristics. A lot of people feel quite urgent, especially at the beginning because they suddenly realise, sod it, I’ve got to pay of this mortgage a lot faster than I otherwise would have time to do and I’ve got to get my buck in a row and sort my family out and try and make the best of thing for as long as possible and keep going for as long as possible. So there is a real drive, usually, especially if there are children. Um, a quite a lot of the other thing that happens, in my experience of having a marriage that ended isn’t unusual. People with young onset dementia have young partners.
So, I can really see my wife grieving, and while living with it while it happened, she was grieving for the partner she once had, the co-parent that she used to have, for the lover that she used to have resourceful person that she used to have…All of those things were roles that I had and so marriage breakdown is quite common with young onset dementia. I estimate, I’ve got no evidence, but it’s just anecdotal from people I know, there’s about a third of people with young onset dementia wind up living by themselves. And the sort of social safety net, the solidarity safety net that’s breaking down under the strain of financial disaster at the moment that doesn’t pick up some people. So some people, with young onset dementia probably have to struggle longer, harder and much more and it’s because, we’re always too young to get a pension. The out of work benefits are now driven by an agenda that for getting people back to work not for people with a degenerative condition where things are only going to get worse, that’s a big ask and it’s hard. Having to negotiate that system is quite hard, so most of us don’t claim.
Liz: We’ve talked a little bit about this, but how do you think that young, or younger onset dementias differ from old or older onset dementias?
Larry: I think, well one of the things that’s distinctive is that I’m only sixty so I might have 20, 25 years to go and I’m really fit and healthy now. My lifestyle changes have really paid off. I’m not as heavy as I used to be, I’ve got a lot more leisure than I’ve ever had before. Um, I’ve got time to notice that the flowers are yellow and the blossom is fragrant and the wind on my face feels nice. And that’s really lovely. I could live a really long time but not have much capacity in the last bit of it. So I think family breakdown and carer burnout is a particularly specific thing to young onset dementia.
Most social care for people with dementia is just provided by family members. The problem with people with young onset dementia who come from an era when we had to get on our bikes because Mrs Thatcher resorted us to do that, so most of our families have become dispersed. You know, I have family members in Australia, Canada, all over, they had to go there to get work. None of them live anywhere near where I live… So, for people with young onset dementia, people with family carers on the ground and they’re usually distance carers and dispersed and there’s nobody close by.
The other thing that happens with people, with young onset dementia is you get premature admissions to care facilities, long before the person of that age would actually need to have institutional care provision, because they can’t manage anymore, they’ll likely to wind up there because they’ll have much more acute admission. They’ll become more chaotic in an noncompliant patient, and the GP and, or consultants will say, stick them in a care home because that’s the easiest way to house him.
I was in a care home the other day. … Getting them out from those four walls, into the sunshine, blue skies, birds singing. Even if it’s just a walk around the park, or walk along the shore, a trip in a mini bus and go out around a stately home. You know, get out of these four walls because people die quicker in care homes than they otherwise would. It’s a bit of a dire destination for someone with young onset dementia.