1. LIVING WITH DEMENTIA Healthcare Assistant Conference 16 September 2015 Dr Manjit Purewal

2. What do you want from today?

3. On living with dementia: “Yes I can remember things, but it takes… takes time to… to get them up now. It takes about 20 minutes before I can remember… what… I was going to say, but by which time everybody’s on a different… a different thing, you know.”

4. What is Dementia Dementia is a general term for loss of memory and other mental abilities severe enough to interfere with daily life. It is caused by physical changes in the brain. Dementia is caused by structural and chemical changes in the brain as a result of physical diseases – it is organic

5. PREVALANCE It is estimated that there are now 800,000 people in the UK with dementia; forecast to increase to over a million people by 2021

6. Different Types ALZHEIMER’S DISEASE  Most common  Can not remember recent things  Apathy and depression  Poor judgement  Impaired communication  Behaviour change  Change in speech, swallowing, walking

7. VASCULAR DEMENTIA  Approx 10% of all cases  Inability to make decisions, plan, organise  Occurs to damage to small blood vessels or bleeds within the brain.  Where the damaged vessel is determines the impact  Changes visible on scans

8. LEWY BODY DEMENTIA  Memory problems, thinking problems like Alzheimer's, but initial sleep disturbance, hallucinations MIXED DEMENTIA  More than one type of dementia present PARKINSON’S DISEASE  similar to Lewy Body or Alzheimer’s.

9. Long term conditions and Dementia

10. Integrated care and dementia from Scottish School of Primary Care via John Oldham www.kingsfund.org.uk/sites/files/kf/sir-john- oldham-year-of-care-capitation-payments-jan13.pdfwww.kingsfund.org.uk/sites/files/kf/sir-john- oldham-year-of-care-capitation-payments-jan13.pdf from Scottish School of Primary Care via John Oldham www.kingsfund.org.uk/sites/files/kf/sir-john-oldham-year-of-care-capitation-payments-jan13.pdf

11. Context Dementia costs the UK £17bn each year 36% of this is informal care 40% of older pts in hospital have dementia (25% of total hospital population) 80% of pts in care homes have dementia Mean survival rate from onset of 5-8yrs

12. Patient story https://www.youtube.com/watch?v=tNG5ho5KKrM&feature=youtu.be

13. On living with dementia: “Yes I can remember things, but it takes… takes time to… to get them up now. It takes about 20 minutes before I can remember… what… I was going to say, but by which time everybody’s on a different… a different thing, you know.”

14. On stigma and attitudes: “I think that most people recognise that memory is not a visible thing… and that’s a real problem with it… people don’t recognise that you’ve got a memory problem.”

15. Carers

16. Carers: On early diagnosis : “The GP said it was depression, but I knew it was more than that. We have been married for forty three years through thick and thin. I knew something was wrong. I just knew.”

17. Carers On early diagnosis : “Before (my husband) got given a diagnosis I hated him. I couldn’t understand why he was being like he was and I hated him sometimes but I didn’t want to. He just wasn’t my (husband) any more. When I found out that there was something else making him like he was then it made it a bit easier because he wasn’t doing it on purpose, see?”

18. Carers: On early diagnosis (3 of 3): “It’s not just short-term memory loss. Memory loss is the least of our worries; it’s the loss of reasoning that is far worse and far more difficult. If it was just the memory loss, that would be okay. It’s the reasoning you see because you can’t make them understand what to do.”

19. DIAGNOSIS Dementia is under diagnosed: Dementia is difficult to diagnose (and to differentiate from normal ageing) There are a perceived lack of options for treatment and intervention

20. Screening What investigations? 6-Item cognitive impairment test (6 CIT) Mini-mental state (MMSE) CT scan Memory clinic

21. Blood tests FBC U&E LFT Hba1c or glucose Cholesterol B12/folate

22. Person-centred? Person-centred care for dementia moves away from traditional task-orientated health care A more holistic model of care that emphasises patients’ perspectives and their self-defined experiences and needs For example, if someone with dementia is becoming agitated and aggressive, we try and understand their experience and frustrations, and not think of aggression as an inevitable ‘symptom’ of dementia.

23. What do people with dementia and carers need ? Dementia Self- management Education -Coping with dementia -Annual refresh Someone to talk to who understands & listens Keeping active- Social Mental Physical Help to plan ahead & make decisions Timely access back into services : Change & Crisis Information, Advice & Signposting Dementia- friendly community Support planning and review Prescribing and prompting medication

24. On stigma and attitudes : “It’s a different attitude entirely, and that’s the… probably the curse of people who have mental problems, that they think they’re… they think that everybody else thinks that they’re different, and that… so they are different, because it makes them feel different.”

25. Why me? Be more vigilant when seeing patients Better understanding Part of a team Better Sign posting Reassurance Anything else?

26. THANK YOU