Understanding Dignity in Ageing: what professionals can learn from older people Liz Lloyd

1. Understanding Dignity in Ageing: what professionals can learn from older peopleLiz Lloyd The Oldest Old Age UK/New Dynamics of Ageing 11.03.2013

2. Dignity – often in the news • Easier to identify dignity when it’s under threat • Usually in the news for episodic scandals • For older people in care, responsibility for their dignity is usually perceived to be in the hands of care givers • There is growing recognition that better environments of care are a pre-requisite of dignity

3. In (English) policies: dignity is now a ‘quality standard’ • ‘Benchmarks for privacy and dignity’ in the NSF Older People (DH 2003) • Incorporated into Key Performance Indicators and Registration Requirements of Care Quality Commission • Now care home providers pay consultants for advice on how to comply with these requirements. Has a ‘dignity industry’ developed?

4. Common features of policies on dignity • Zero tolerance of abuse • Empathetic approach, listening skills • Individualised, personalised services • Recognise right to privacy • Recognise right to complain without fear of retribution • Promote choice and control and self-esteem • Alleviate loneliness and isolation • Treat carers as partners

5. Ways of seeing dignity: both objective and subjective Associated with high rank and the majesty of office (the original meaning) Universal human value and rights Moral behaviour – dignity of understanding moral and ethical codes of behaviour that transcend legal and institutional demands. Individual identity, self-reliance and autonomy (see Rosen 2012, Nordenfelt 2009)

6. Dignity of being human, • The only kind of dignity that is fixed. A basic human right that applies equally to all, including those who lack mental capacity.

7. Dignity as identity • ‘The dignity we attach to ourselves as integrated and autonomous persons with a history and a future, with all our relationships to other human beings’ (Nordenfelt 2009:33). • Challenged by loss of capacity for self-care and increased dependence on others • Can in turn lead to loss of self-respect, self-esteem and self-confidence. • What about the relevance of the future in very old age?

8. Morality and ethical standards • Achieving ‘moral stature’ - linked with being respected and with self-respect • The ‘fiercely independent ‘ older person – striving to achieve moral stature by not being a burden • Neglectful and/or offensive behaviour diminishes the moral stature (and dignity) of professionals and carers

9. The ‘Maintaining Dignity in Later Life’ project A longitudinal qualitative study of 34 people aged 70+ with need for help and support 4 or 5 interviews with each participant over 30 months. Based in Bristol and Nottingham

10. Key questions • What do participants’ accounts of their everyday life and relationships tell us about dignity? • What factors are perceived to support or undermine a sense of dignity? • How do they manage the transition from self-reliance to dependence when circumstances change? • How do they see the future?

11. A precarious present and an uncertain future ‘Well … I’d be quite happy if we could stay as we are, but … I mean as things go, I mean I realise uh … what’s happened in the last 5 years has sort of uh … there’s quite a bit changed for us - had tochange. And in the next 5, I don’t know what will happen. Or the next one or two really (Doreen,80)

12. Bodily decline: a challenge to the dignity of identity every day • Having to wear bandages, not being able to wear shoes, • Facial swelling, rashes, sweating, body odours, tremors, pain, loss of sensation, incontinence • Living with colostomies, mastectomies etc. • Loss of strength, ability to bend, stretch, reach • Impairment of vision, hearing, taste. • Effects on relationships, intimacy and social life.

13. ‘I just fell down, and it’s very hard to get up. People had to help me up and it’s very humiliating. (Jonathan, 85) ‘I told [the Parkinson’s nurse] that I left the statins off and I said I’d sooner drop dead from a heart attack in a week’s time than live another 10 years and end up like a...with more and more...like a cabbage, you know.’ (James, 80)

14. Asking for help • ‘We don’t like calling on other people for help. We like to be independent as far as we can be’ (Harry,90). • ‘So it’s like…. that’s where the word ‘dignity’ comes in, isn’t it? It would take it…. you would feel like they were taking it away from you if you’re not capable of doing it. So .. having carers would take away your dignity’ (Adrian, 81, on the prospect of personal care)

15. ‘It works both ways because I get asked quite a lot’ (Alice, 80). • ‘I’ve been dependent on people for so long now ….. I’m quite used to it. I can’t say I feel any lack of dignity due to my needing help (Howard, 83).

16. Relationships – crucial to dignity • Essential to the maintenance of identity • Those who lacked supportive families and friends were at a disadvantage in the care system but good relationships with care staff were a major boost to sense of self-respect • Neglect and ill treatment further undermine dignity of identity but a personal sense of moral worth can help mitigate the effects of neglect and ill treatment.

17. Experiences of professionals: woeful and wonderful • ‘When you come out of hospital and you’re geriatric anyway and they automatically look at it: can this person continue to live without needing to go into full time care’? (Michael, 84) • James was told his stoma treatment might make him impotent. ‘when I said to [the nurse] that I was having an intimate relationship with a woman, like, much younger than me … “Ho,ho,ho” she fell about laughing’. (James, 80)

18. Frederick ,81, at the hospital with the eye specialist ‘He was quite angry about …. the fact that he’d got no notes, he didn’t know what he was looking for and he was … it upset me a little bit and I got confused and I got mixed up with whether it was the left eye or the right eye. And then he said … he said ‘You’re not very bright, are you?’ (laughs) and I said ‘No, I’m not’.

19. What participants appreciated • Attentiveness: to be offered help before having to ask, kindness in approach • Competence: staff who know what they are doing • Efficiency: not being messed around with appointments or carers not turning up • Information: clear, helpful and straightforward • Respectful service culture: clean and pleasant surroundings, courtesy, a sense that staff are happy to help

20. Dignity as a human right • Dignity in individual care relationships is hard to achieve when dignity in old age is undermined in the context of care • The broader policy context of care is not conducive to dignity. In general older people are perceived as burdensome • Older people’s rights are curtailed but fought for. The ‘right to care’ for is hard to envisage in a culture that abhors dependency.

21. Battle against the loss of self-reliance or give in gracefully? • Participants were engaged in an perpetual reflexive process – not wanting to give in to bodily decline but knowing that eventually they would have to. • Perseverance was the word many used to describe the hard work involved in this reflexive process.

22. Individual care workers can and do support a sense of self-worth ‘The majority of people come here [to his home], shake my hand then shake my hand when they go. Well that’s an expression to me that you know they feel as though they’ve done something for me.’ (Harry, 90)

23. Dignity cannot be ‘delivered’ • Dignity in care cannot be 'delivered'. It is the outcome of respectful and considerate relationships in which older people are actively engaged in maintaining their sense of identity and moral worth. • The dignity of people who use services is inseparable from the dignity of those who provide them.

24. References • Lloyd L, Calnan M., Cameron A, Seymour J, and Smith R (2012) ‘Identity in the fourth age: perseverance, adaptation and maintaining dignity’ Ageing and Society (First view CJO 2012) • Nordenfelt L. (2009) ‘The concept of dignity’. In Nordenfelt, L. (ed) Dignity in Care for Older People. Oxford, Wiley-Blackwell, 26-51. • Rosen, M. (2012) Dignity: its History and Meaning. Cambridge MA, Harvard University Press • Tadd W and Calnan M. (2009). ‘Caring for Older People : Why Dignity Matters – The European Experience’ in Nordenfelt, L (ed) Dignity in Care for Older People. Oxford, Wiley-Blackwell,119-142. • Woolhead, G., Calnan, M., Dieppe, P. and Tadd, W. 2004. ‘Dignity in older age: what do older people in the United Kingdom think?’ Age and Ageing 33, 2,165–170.