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EVIDEM
www.evidem.org.uk
Planning for retirement and
later life
Ref no.: OS138
Jill Manthorpe
Kritika Samsi
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NIHR: Programme Grant for Applied Research
Hosted by Central and North West London NHS Foundation Trust
In collaboration with University College London, King’s College London, St. George’s, University of London, Kingston University, London School of
Economic and Political Sciences and The University of Hertfordshire
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Study context
EVIDEM
www.evidem.org.uk
o EviDEM: Evidence-based interventions in
Dementia
o Five year research programme funded by National
Institute for Health Research
o www.evidem.org.uk
o EviDEM-MCA nested within programme of
research
o One sub-sample presented today
__________________________________________________________________________________________
NIHR: Programme Grant for Applied Research
Hosted by Central and North West London NHS Foundation Trust
In collaboration with University College London, King’s College London, St. George’s, University of London, Kingston University, London School of
Economic and Political Sciences and The University of Hertfordshire
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Background
EVIDEM
www.evidem.org.uk
o Current legislation (i.e. Mental Capacity Act 2005)
encourages older people to plan in advance for later
life
o Among other things, encourages appointment of
proxy decision-maker and pre-specifying
preferences in case of future loss of capacity to
make one’s own decisions
o Encourages advance planning and decisions,
including refusal of treatment
o Enables the granting of a Lasting Power of
Attorney, capable of making decisions on
financial and personal welfare issues
o Studies show people value autonomy and retention
of independence for as long as possible
__________________________________________________________________________________________
NIHR: Programme Grant for Applied Research
Hosted by Central and North West London NHS Foundation Trust
In collaboration with University College London, King’s College London, St. George’s, University of London, Kingston University, London School of
Economic and Political Sciences and The University of Hertfordshire
Research Questions
o What are the planning patterns of older
adults living in the community?
o How do they approach planning for later
life?
o What issues do they take into consideration
prior to setting out formal arrangements?
o What sources of support and information
assist with this?
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EVIDEM
www.evidem.org.uk
Methodology & Recruitment
o Recruitment was through established community
groups (social clubs, lunch clubs) and flyers put up
at these venues
o Following introduction of the topic by moderator of
group, information sheet handed, study explained
and permission to set up an appointment sought
o Most visit were in people’s homes, some in day
centres too
o Capacity assumed and consent sought
o Snowballing technique also used
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EVIDEM
www.evidem.org.uk
Sample
o Qualitative interviews with 37 participants
o Mean age 71.4 years (range – 53 to 86 years)
o Mostly female (30 people; 81%)
o Ethnic group described
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EVIDEM
www.evidem.org.uk
White British: 21
Black Caribbean: 6
African origin: 3
Indian origin: 3
Guyanese: 2
Irish: 1
Scottish: 1
Findings
o Types of plans
o Individual inclination to plan
o Irrelevance of planning
o Advice and support with planning
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EVIDEM
www.evidem.org.uk
Types of plans
o A will was common and been fairly
straightforward to draw up
o Funeral plans also fairly common
o Absence of consideration of health and
social care plans
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EVIDEM
www.evidem.org.uk
Individual inclination to plan
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o Lifelong personality habit
o Religious beliefs
o Family reliance
“I don’t care if I am dying tomorrow, I said
to people look, if it is my turn that God
said I should come and join Him, I said I
am prepared, what is the use of going to
plan, what is the use of worrying?” –
Female, age 65
EVIDEM
www.evidem.org.uk
Single people living alone
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“This is one of the problems I have been dealing with to
do with Power of Attorney for personal health and
welfare, well I don’t know what you feel about that, to me
it is just a load of rubbish. I have got all those
documents from a solicitor, but it just does not work for
people with no families. What the Government has to
realize is that as I get older my friends get older. No way
can I ask a friend my age. Younger friends lead very
busy lives and they have got family problems of their
own.” - Female, age 74
EVIDEM
www.evidem.org.uk
Irrelevance of planning
o Perceived and enacted support from
family
o Perceived support from medical
professionals
o Nothing to leave to future generations
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EVIDEM
www.evidem.org.uk
“No”
Family could be relied upon
to make decisions
“Well I have got children, I
have two daughters, two
sons, and they will look
after me, well they are
looking after me at the
moment you know.”
Interviewer: What about if
you had to move, or if you
needed treatment?
“I don’t know, my children
would decide, yes. Well, I
know my children don’t
want me to move out of my
home at all, they know what
I want with treatment.”
– Male, age 80
“Yes”
Perceived and enacted
support from family
Families would be left with
difficult choice
“Yes, [I have] a Living Will,
my doctor, my lawyer, the
children know, the point of
my doing that is, say I was
like a cabbage
somewhere, do we pull the
plug? Well which one [of
my children] has to
decide? I don’t want any
of mine to do that, I would
hate to have to do it
myself..”
– Female, age 85
“No”
Medical professionals
could be trusted to ‘do the
right thing’
“I have a very good doctor,
there is a group of doctors,
and they are very good and
the hospital is very good.
Well my plan is – I have to
work with my doctor and
consultant – yeah that is the
only plan, to work with my
GP. And I mean if I need
treatment, I wouldn’t want
them to say don’t give her
treatment or not because I
am not one of those. I would
leave it to them.”
– Female, age 78
“Yes”
Perceived support from
medical
professionals
If diagnosed with a
debilitating illness
“If I made plans in the
future, well I could think of
an event immediately that
would save me the trouble
– if my doctor tells me I
have only six months to
live, something like that.
Or, I think if a doctor told
me that I had dementia,
then yes I would be making
plans in that case”
– Male, age 70
Awareness & Understanding of MCA
o Mixed levels of awareness of health and social care
o ‘Common-sense understanding’ of its principles, rather than
legal definition
“Oh now, is it while you are still alive… choices about your house
and all that… in case you go into care and somebody has to pay
the bills? Yes, that’s it” – Male, age 60
o Planning conceptualized entirely in terms of finances, not health or
social care
o ‘Living Wills’ ‘Advance Directive/Decisions’ inaccurately understood
– Associated with euthanasia; aware that it was
against the law in UK
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EVIDEM
www.evidem.org.uk
Implications
o Level of planning is specific to each individual
o Not part of everyone’s culture or personality
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o Financial advice more widely available; health
and social care advice more event-driven
o Reliance on family and other situational factors
may result in disinclination to plan
o Plans usually made in best interest of
surviving family
o Information might be targeted towards single
people
EVIDEM
www.evidem.org.uk
Disclaimer
This study has received financial support from
the National Institute for Health Research
(NIHR) Programme Grants for Applied Research
funding scheme. The views and opinions
expressed therein do not necessarily reflect
those of Central & North West London NHS
Foundation Trust, the NHS, the NIHR or the
Department of Health.
Thank you!
For further information, please contact:
Jill Manthorpe, jill.manthorpe@kcl.ac.uk
Kritika Samsi, kritika.1.samsi@kcl.ac.uk
www.evidem.org.uk