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

Some gerontological thoughts on The Iron Lady

I went to the cinema this week and saw The Iron Lady, Phyllida Lloyd's biographical(ish) film about Margaret Thatcher. There's lots I could comment on, but I'll limit myself here to some things that struck me as a gerontologist and someone who is particularly interested in normative and non-normative life courses.

(cc) Joybot

One of the things I really liked about the film was the fact that the central character was (when not in flashback) an old woman. So few films have protagonists even in mid-life that it was really refreshing and interesting to see one in deep old age (for further discussion of older people in films, can I recommend ageing, ageism and feature films and the work of Josie Dolan at UWE). One of the things I've been thinking a lot about in the last couple of years is how people can be enabled to better imagine their own ageing and eventual old age. Fictional portrayals of later life are an obvious way of helping with this but there aren't many out there (although the FCMAP project has a collection of novels here). While I loathed the real Margaret Thatcher in her heyday with all the fervour of a leftie teenager and young adult, I found the fictional portrayal of her old age deeply moving and sympathetic.

As I understand it, hallucinations are rare in most common forms of dementia, including the form that Margaret Thatcher is thought to have, but I'm not talking here about the reality or correctness of what is portrayed. As a way of representing the sheer impossibility of believing that someone who has been an intimate part of your life for 50 years is no longer there, I thought the hallucinations of Dennis worked really well. I don't know whether that is how people feel after such a bereavement but it certainly made me imagine being in that situation.

I also thought the film did a good job of conveying the ways in which older people are so often treated as incompetent, irrelevant and foolish. Scenes such as the one in the corner shop - when she is pushed out of the way by the man on his mobile phone - are entirely everyday. For example, the Research on Age Discrimination research, undertaken by members of the Centre for Ageing and Biographical Studies a few years ago, found that being treated as seemingly invisible was reported as one of the most prevalent forms of everyday ageism. But seeing this happen to someone who used to be the prime minister makes even clearer the fact that it doesn't matter who you used to be, once you are put in the category 'old person' you are at risk of being treated in this way.

(cc) rileyroxx

I was also interested in (but much less keen on) the way the film ended up focusing so much on her personal life, especially her relationships with her father, husband and children. I am suspicious that one of the reasons the film-makers decided to do this was because if they had failed to do this for a woman who was known to have been married and to have had children, it would have felt like too incomplete an account of her life. Filming a biography of a male public figure with only passing reference to his private life would probably be unremarkable but, since they wanted to make her at least somewhat sympathetic, I wondered whether this partly pushed them into featuring her private life more heavily. I don't know. I may be coming over all second-wave feminist on this one. It has been known.

And this made me think about the cultural difficulty of telling a story of someone's old age that doesn't make it seem as if it was their family and any descendants that really mattered in the end. In societies such as the UK, where paid employment is so highly valued, I wonder whether, once you are beyond paid employment, the main culturally available narrative is of the significance of family. As you may have read in the entry previous to this one, my colleague Jill Reynolds has found that some older people without children report that their friends with children and grandchildren seems to have lives (boringly) limited to their families. I'm sure that, for many people, their family does become the main focus of their lives when they are old. And that's fine. But for other people, such as those who haven't had children, who are estranged from their families and whose lives have not revolved around their families, such as Margaret Thatcher, I'd like there to be a greater range of ways of telling the story of someone's life.

Accounting for being single without children in later life

When I originally researched singleness among women in their middle years I talked both to women who had always been single and to those who were single again following marriage or a long term relationship see The Single Woman: a Discursive Investigation, Jill Reynolds published by Routledge. 

Some had children, many did not and I noticed that these latter had a double set of accounting to do. They often felt required to explain why they were single. They also found it hard to respond to questions on whether they had children, which were sometimes actually followed up with a 'why not?', although more often this unspoken query remained implicit.

This brief video gives some examples of how participants responded in my interviews.

I have interviewed many of these women a second time in 2011, now that they are aged more than 60 years. In further analysing data from other researchers (Arber and Davidson*, Bowling**) who included childless people in their research samples of those aged 65+, I noted that while most participants introduced references to their children and grandchildren into discussions on the quality of their life and what made them happy, it was rare for participants to be asked how they felt if they were without children at this point in their lives. 
 
My follow up interviews highlighted that those without children did not lack for activities that contributed to happiness: nice walks and sunshine were often mentioned; and many felt their quality of life had increased, giving up work had meant a weight lifted from their shoulders, and they described themselves as more confident than when younger. Since my original interviews some 13 years earlier two participants had, like myself, married someone they had been seeing regularly. While for some there was no regret about not having children, a question on 'what if?' produced a number of responses such as 'who will be there to do for me what I did for my mum?'

In contrast to discomfort felt when younger in comparisons between their life and that of friends with children, many were more comfortable with their own situation and might refer to good relationships with their friends' now adult children. Interestingly, a number of participants mentioned talk by their friends in older age about younger family members as something of a nuisance that could make for tedious conversation: 'I wish we could talk about something other than their grandchildren', or 'it cuts down their self-awareness as if they can only focus on somebody else'. Something had changed in their balance of accounting so that some participants positioned themselves as companionable, free and active, while positioning their friends with grandchildren as burdened by a sense of duty that required them to prioritise time caring for them and a narrow conversational focus.

 *85 interviews men over 65 years (UKDA 6011 Arber, S. and Davidson, K., Older Men: their Social Worlds and Healthy Lifestyles, 1999-2002 of whom 15 had no children
** 80 interviews men and women over 65 years (UKDA 5237, Bowling, A. Adding Quality to Quantity: Quality of Life in Older Age, 2000-2002) of whom 14 had no children