STRIVING FOR BETTER OUTCOMES FOR PEOPLE WITH DEMENTIA AND THEIR CARERS

1. STRIVING FOR BETTER OUTCOMES FOR PEOPLE WITH DEMENTIA AND THEIR CARERS Barbara Pointon barbara@pointon.name

4. Dementia is everybody’s business Over 100 types; accurate diagnosis – treatment differs 1 in 14 people at 65; 1 in 6 over- 80s; 1 in 2 over-90s Growing number of younger people Over a third of those over 65 will have dementia in the last year of their life 66% of people in care homes have dementia Under-recorded on death-certificates; 2nd killer? 29% of people dying from heart disease, cancer and respiratory disease have a co-morbidity of dementia Can die with and from dementia.

5. 1. The early phase Took 2 years to get correct diagnosis Looking behind the depression for tell-tale signs: mistakes in ingrained skill; uncharacteristic behaviour; visuo-spatial problems When we know, we can make allowances and protect the relationship Wasted 2 years - we could have had a whale of a time Following diagnosis, we were dropped into thin air. I was left alone to reinvent the wheel Caring in dementia begins at diagnosis

6. Better outcome: Earlier diagnosis and support Compulsory undergraduate education for GPs (54% not confident in diagnosis or management); referral of patient to consultant if at all suspicious. More public awareness, especially those in regular contact with the elderly, to spot tell-tale signs Early use of dementia drugs to retain higher capacity Support from the point of diagnosis A dementia care adviser attached to the family from the outset, for advice and active co-ordination of care; dementia care criss-crosses traditional boundaries and people fall into holes; support provided by partnership between statutory and voluntary services

7. 2. The middle phase: domiciliary care Caring for people with dementia is not the same as caring for the frail elderly- it requires more skill Insufficient time allowed for tasks/psychological needs Travelling time – skimmed off client’s time Good matching of client and careworker (Crossroads) Agency live-in carers untrained in dementia care – and so was I. Good communication essential when speech falters Misunderstanding perplexing/aggressive behaviours- didn’t know about seeking reasons and solutions Only offered the medicine bottle. Overmedication.

8. If only I’d known...... Not to overstep the fine line between caring and controlling – bossiness is not on. Does it really matter? Who is it a problem for? Don’t try and make things ‘normal’. Go with the Flow. Give people time to do things in their own way Celebrate what they can still do, not moan about what they can’t – is the bottle half-empty or half-full? 84% of people with Alzheimer’s have visuo-spatial problems and miscue their environment. Sent 14 different carers in 8 months – exhaustion. Put Malcolm in a home for my sake, not his.

9. Better outcome:Improved quality of care and of life Training for both the family carer and paid carers, especially in communication and understanding perplexing behaviours – role for dementia care adviser Not allowing caring to slip into controlling As much continuity of staff as possible Time is the greatest gift you can give Eradicate unnecessary medication If Malcolm had been more content as a result of more enlightened care, I would have carried on caring at home.

10. 3. In the nursing home Staff were kindly and did their best Few activities; garden off-limits for many TV not appropriate for most people with dementia Rigidity: consultant recommended reduction of Epilim in line with severity of dementia and/or weight loss This applies to all medication in dementia No power to change drug chart; not actioned by GP or staff: “easier to manage now he’s off his feet” Asked for a meeting: “Interfering Relative” label Charging for NHS expertise – residents are still NHS patients wherever they live – discriminatory?

11. Better outcome:Improved quality of care and of life The issues listed in the last turquoise slide plus: More activities; access to garden; TV in special room which people elect to view Avoidance of unnecessary medication; re-examine prescribing roles of consultants and GPs in care homes Family carers seen as partners in care Equal access to NHS expertise from the community

12. December 1999

13. April 2000

14. At home again: better outcome:maintaining quality of care and of life Direct Payments gave us: choice as to who worked in our home; opportunity to match skills and interests; continuity of personnel – got to know Malcolm well ability to spot small changes from the norm Malcolm too frightened to go away for respite – bought in replacement care at home Cost less than Agency care and carer earned more. Malcolm fed orally (PEG feeding is not recommended in dementia) – it is the most trustful thing to open your mouth to be fed – continuity of staff essential

16. The downside of Direct Payments A few carers from hell Social Services, as well as offering support in the management of individual budgets (e.g. via organisations like the Rowan) could compile a register of approved carers plus up-to-date references. High qualifications are not necessarily a guarantee of quality care; experience, willingness to learn and the right attitude are often better indicators Hiccup when Malcolm gained continuing care – need to keep same staff. Individual healthcare budgets? See Health Act 1999 Section 5A.

18. 5. The end stage: better outcome:holistic care The lower two layers become more exposed & important, yet often the most neglected Stimulation of the 5 senses Sight: bright colours, smiley faces, changes of viewpoint Taste: oral feeding, strong flavours Smell – cooking, aromatherapy Hearing – favourite music, human voices and laughter Touch – the most important of all Psychological need to feel safe Spiritual needs not just about religious rites – basic human need to feel loved and cherished

20. 6. At every stage: better outcome:holistic care=quality of life Because the brain controls everything we do, say or think, when dementia attacks the brain, it affects the whole person. So it requires holistic care: physical, mental, social, psychological, sensory and spiritual. This is the overarching outcome to strive for, whatever the care setting, in order to maintain or improve quality of life.

21. 7. A postscript – for action Palliative care was not available in our area – only for cancer People with dementia unnecessarily shipped to hospital to die in unfamiliar, even frightening environment because of insufficient support for staff and family at home or in care homes. Many improvements over the last years, but there is still a long way to go to make the outcomes for people with dementia and their carers what we would wish for – for ourselves and our families