Planning for retirement and later life

1.  EVIDEMwww.evidem.org.uk Planning for retirement and later life Ref no.: OS138 Jill Manthorpe Kritika Samsi __________________________________________________________________________________________ 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

2.  EVIDEMwww.evidem.org.uk Study context • EviDEM: Evidence-based interventions in Dementia • Five year research programme funded by National Institute for Health Research • www.evidem.org.uk • EviDEM-MCA nested within programme of research • 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

3.  EVIDEMwww.evidem.org.uk Background • Current legislation (i.e. Mental Capacity Act 2005) encourages older people to plan in advance for later life • 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 • Encourages advanceplanning and decisions, including refusal of treatment • Enables the granting of a Lasting Power of Attorney, capable of making decisions on financial and personal welfare issues • 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

4. Research Questions • What are the planning patterns of older adults living in the community? • How do they approach planning for later life? • What issues do they take into consideration prior to setting out formal arrangements? • What sources of support and information assist with this?  EVIDEMwww.evidem.org.uk

5. Methodology & Recruitment • Recruitment was through established community groups (social clubs, lunch clubs) and flyers put up at these venues • Following introduction of the topic by moderator of group, information sheet handed, study explained and permission to set up an appointment sought • Most visit were in people’s homes, some in day centres too • Capacity assumed and consent sought • Snowballing technique also used  EVIDEMwww.evidem.org.uk

6. Sample • Qualitative interviews with 37 participants • Mean age 71.4 years (range – 53 to 86 years) • Mostly female (30 people; 81%) • Ethnic group described • White British: 21 • Black Caribbean: 6 • African origin: 3 • Indian origin: 3 • Guyanese: 2 • Irish: 1 • Scottish: 1  EVIDEMwww.evidem.org.uk

7. Findings • Types of plans • Individual inclination to plan • Irrelevance of planning • Advice and support with planning  EVIDEMwww.evidem.org.uk

8. Types of plans • A will was common and been fairly straightforward to draw up • Funeral plans also fairly common • Absence of consideration of health and social care plans  EVIDEMwww.evidem.org.uk

9. Individual inclination to plan • Lifelong personality habit • Religious beliefs • 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  EVIDEMwww.evidem.org.uk

10. Single people living alone “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  EVIDEMwww.evidem.org.uk

11. Irrelevance of planning • Perceived and enacted support from family • Perceived support from medical professionals • Nothing to leave to future generations  EVIDEMwww.evidem.org.uk

12. Perceived and enacted support from family “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” 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

13. Perceived support from medical professionals “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” 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

14. Awareness & Understanding of MCA • Mixed levels of awareness of health and social care • ‘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 • Planning conceptualized entirely in terms of finances, not health or social care • ‘Living Wills’ ‘Advance Directive/Decisions’ inaccurately understood • Associated with euthanasia; aware that it was against the law in UK  EVIDEMwww.evidem.org.uk

15. Implications • Level of planning is specific to each individual • Not part of everyone’s culture or personality • Financial advice more widely available; health and social care advice more event-driven • Reliance on family and other situational factors may result in disinclination to plan • Plans usually made in best interest of surviving family • Information might be targeted towards single people  EVIDEMwww.evidem.org.uk

16. 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.

17. 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