Transcript Type title here

Understanding Dignity in Ageing: what
professionals can learn from older people
Liz Lloyd
The Oldest Old
Age UK/New Dynamics of Ageing
11.03.2013
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
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?
Common features of policies on dignity
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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
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)
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.
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, selfesteem and self-confidence.
• What about the relevance of the future in very
old age?
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
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
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 selfreliance to dependence when circumstances
change?
• How do they see the future?
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 to change. And in the
next 5, I don’t know what will happen. Or the
next one or two really
(Doreen,80)
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.
• ‘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)
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)
• ‘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).
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.
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)
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’.
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
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.
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.
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)
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.
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.