1. Gerontological Society of America 63rd Annual Scientific Meeting New Orleans 21 November 2010 Perseverance: Older People’s Experiences of Adaptation to Loss of Independence. Liz Lloyd (PI) Ailsa Cameron, Randall Smith, Kate White (University of Bristol), Michael Calnan (University of Kent) Jane Seymour (University of Nottingham)

2. Overarching aim of the project To identify factors perceived to promote or undermine a sense of dignity in older people in need of support and care

3. Methods: a brief overview Longitudinal qualitative study: November 2007 - March 2011 4 in-depth interviews with 34 participants (21 men 13 women) who are in the study for up to 27 months All invited to nominate a supporter Telephone contact in between

4. The participants Aged 75+ and have need for help and support because of health problems All lived at home at start of study. 4 have moved to care homes or more supported housing. 2 are considering this possibility currently All have multiple health problems eg COPD, emphysema, heart problems, cancer, problems with bowels, skin. All have reduced mobility due to eg arthritis, osteoporosis, dizziness, failing eyesight etc, Six have died during the course of the study

5. Inter-related dimensions of dignity Universal human value Identity – I know who I am and others also recognise this Moral stature – I have self-respect even when my human rights are threatened Merit – credit for extraordinary efforts (avoiding being a burden on others) All above are threatened by illness and loss of independence

6. Significance of illness for dignity of identity Complex relationship between illness and ageing: seeing oneself as old because of illness or seeing the illness as something separate from ageing. Importance of understanding dignity as an embodied experience – appearance, including use of mobility aids is an important aspect of this Threat to identity from illness can be reduced or compounded by the behaviour and language of others, including health professionals

7. Failing health and its consequences for the dignity of identity Critical moments: Identification of experience as ‘illness’ Decision whether or not to seek help – and from whom Ongoing Effects of illness on body, mind, self relationships, home

8. Dealing with the bodily effects Prevention: diet, exercise (including mental), healthy routines, self-medication Monitoring: regular tests, x rays, check-ups. Management of illness: individual self-care medication, stoma, continence, falls Practical adaptation to disability: aids for sight/hearing, memory loss, adaptations to home. Mind over matter: bodily strength and energy, perseverance

9. Effect on sense of self Impermanence/contingency: living with the illness that is ‘death made possible’ (Foucault) Comparison with life before and possible future: responses littered with expressions such as ‘still’, ‘as long as’, ‘while I can’, ‘until then’ Maintaining lifelong standards -resisting giving in. Keeping up appearances – cleanliness. Adaptation for meaningful activity: ‘I can’t knit but I’ve taken up tapestry’ Motivation: ‘I set myself a target every day’ or ‘I want to take a long walk off a very short pier’.

10. Effect on relationships Change/loss of old and start of new relationships Finding ways to maintain reciprocity (‘We hold each other up’) or not (marital/family strife). Bulwark against the outside world (keeping up appearances) or fear of betrayal. Growing dependency: –Practical help –Security and safety –Personal help and bodily care Fear of burdensomeness/surrender of control

11. Coming to terms with the difference Fear of not being able to manage but also inventive ways of coping with changes – specific, detailed and focused. Compromises and solutions reached jointly with family/friends Or no compromise: ‘Time to call it a day’

12. Adapting to loss of independence The weight of physical, mental and emotional labour involved in maintaining dignity of identity. Differences between participants demonstrate the limitations of a universal model of dignity Need to understand better the impact of cultural values: the ‘heroic script’ of ageing independently is unhelpful when people are persevering with growing dependency