Rethinking 'dementia' collaborative event CABS/DART 28th May Manchester

Rethinking ‘dementia’: Multi-disciplinary approaches to the meanings of dementia in everyday life

University of Manchester, Monday 28th of May

This is a collaborative event supported by MICRA (the Manchester Interdisciplinary Collaboration for Research in Ageing, University of Manchester); DART (Dementia and Ageing Research Team, University of Manchester); CABS (Centre for Ageing and Biographical Studies, Open University); the CPA (Centre for Policy on Ageing); CEDER (Centre for Dementia Research, Linkoping University, Sweden); and EDUCATE (Early Dementia Users’ Co-operative Aiming to Educate, Stockport).

Our aim for the day is to foster a debate on the meaning of dementia and the representation and involvement of people living with dementia in research and policy. We would like our speakers and contributors to give particular thought to issues of inclusiveness in research, and the value of drawing upon multi-/inter-disciplinary approaches to understanding issues of everyday living for people with dementia and their supporters.

The tradition for these events is to give plenty of time for input and discussion from everyone who attends. The audience will include a mix of researchers/academics, practitioners, older people and people living with dementia.
It is hoped that a short edited collection will be an output from the day with contributions from each of our speakers. This publication will be part of a series on the representation of older people in research led by CABS and the CPA (see: http://www.cpa.org.uk/pubs/biographicalinterviews.html)

Our provisional programme for the day is given below:
Arrive/coffee from - 10.30
Introduction and welcome 10.45
Discussant: John Keady
Deaf with Dementia (Alys Young and Emma Ferguson-Coleman) - 11 – 11.50
What does Dementia Mean to People Living with Dementia? (EDUCATE) – 11.50 -12.40
Research Briefing: Transitions from Hospital to Care Homes (Caroline Holland and Jeanne Katz) – 12.40 – 1pm

Lunch 1-2 (including a screening of a training video for hospital staff in acute care settings)

Research Briefing: Second Stories: Narrative and Dementia (Sarah Collins) 2 – 2.20
What does ‘Neighbourhood’ Mean to Carers for People with Dementia? (Andrew Clark, Richard Ward and Matthew Hargreaves) 2.20 – 3.10
Everyday Living with Dementia in Sweden (Lars-Christer Hyden and Ingrid Hellstrom) 3.10- 4pm

Closing and thanks - 4pm

For more information or to book a place contact Richard Ward richard.ward@manchester.ac.uk

What if I die before I get old?

I was given the diagnosis of pancreatic cancer a few months ago, and was shocked to learn that the average life expectancy from time of diagnosis is six months.   

Some people I’ve known quote Pete Townshend’s ‘Hope I die before I get old’ as a theme close to their hearts. Well, that was never my attitude. My grandmother lived to 96 years and my mother to 86, so it seemed I had every chance of trying to surpass one or both of them to a higher total. It’s been suggested by University of Michigan researchers Heather Lacey and Peter Ubel that perhaps Pete Townshend wrote these classic lyrics in My Generation because he had a common misconception about old age. He didn’t realise that research shows older people are often happier in their old age than when young; even those who are chronically ill are often just as happy as those who are healthy (http://www.eurekalert.org/pub_releases/2006-06/uomh-hid061206.php). 

I’ve recently been reading Joan Barfoot’s 2008 novel EXIT LINES and was drawn along by the plot which features a set of people brought together by their entry into a local care home: the Idyll Inn. Ruth has osteoarthritis and her body is quite twisted:  someone apparently not so happy in old age, could it be that the ensuing pain has led her to decide that she will take her own life? A further possibility is that Ruth never had any children: does this mean that since her husband’s death she has no feelings for anyone left who needs her?  She looks to her three new companions in care to give her help with her planned exit. They are alarmed and puzzled as to why she is so determined to end it all: they were getting on so well, did she pick them out at first encounter as people who would fall in with her challenging request? 

It seems Ruth is not depressed, and doesn’t hate her life but has an overall sense of discouragement about the world. In contrast, I was more than willing to explore the paths and possibilities of old age and take things as they come. My hopes of exploration suddenly cut off:  ‘I’m only 63, that hardly even counts as being old!’ Apparently my imagined visit to the future to learn from the Jill aged 80+ What do we know about being old and childless? was just that – imagination?

So many questions: how do I tell my friends? Who are my friends? How much do they want to know? How do I feel now about my long-held ambitions for retirement – travelling to South America, improving my Spanish and getting an OU degree in modern language studies? What about the loss of plans now unlikely to be achieved? Are there any positives – what are the things that I now don’t have to do? Can I take each day as a gift and extract maximum pleasure from it? And how about the spiritual – is there any way I can prepare myself for dying?

 

Luckily I don’t have to deal with all these questions alone. People talk about ‘journeys’: a friend writes ‘I hope this one can have some good aspects. It is a journey for us too’. I think she means that friends are sharing my journey with me, whether willingly or unwillingly, almost like Ruth’s poor companions who were compelled to engage with her death plans.  She also of course may have in mind that none of us really know for sure when we are going to die and we all have to face this happening at some time, whether or not we get some advance warning.

 

In particular my husband Dave has been a solid support and wonderful friend: he acts as PA dealing with my medical appointments and tests; researches information about nutrition and other health-promoting actions; makes fantastic vegetable and fruit juices and ‘build-up’ drinks; fights my battles in sorting out pension details; cries and laughs with me and gives me love and affection.

 

My writing on singleness and childlessness does not not view them as states to be pitied – beyond the range of what is ‘normal’ – but as states that are often outside anyone's ability to change, and needing to become part of our more general understanding of possibilities for life as a whole (see The Single Woman: a Discursive Investigation, Jill Reynolds published by Routledge.) None of my writings should be taken as critical of marriage or partnership as such, simply of the privileging of such long-term relationships as the ‘normal’ and therefore ‘to be expected’ pathway that lives should take. So I’d like to go on record here as saying that at times of need, caring and love received, whether from friends or partner, are of incredible value.

 

This is the first in what I hope will be a series of blogs on living with a shortened life expectancy, and addressing some of my questions above.

 

At times of need, caring and love received is of great valu

I'm not the only person facing this likelihood, and I hope that if you have a similar experience, or know someone who does, you will post a comment here - your companionship will be welcome to me. 

Jill Reynolds