LIVING WITHDEMENTIA

Healthcare Assistant Conference

16 September 2015

Dr Manjit Purewal

What do you want from today?

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.”

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

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

Different Types

ALZHEIMER’S DISEASEMost commonCan not remember recent thingsApathy and depressionPoor judgementImpaired communicationBehaviour changeChange in speech, swallowing, walking

VASCULAR DEMENTIA

Approx 10% of all casesInability to make decisions, plan, organiseOccurs to damage to small blood vessels

or bleeds within the brain.Where the damaged vessel is determines

the impactChanges visible on scans

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.

Long term conditions and Dementia

1 2 3 4 5 6 70.0%

5.0%

10.0%

15.0%

20.0%

25.0%

30.0%

35.0%

This chart shows the number of co-morbid long-term conditions that people with dementia have

(number includes the dementia itself)

% of the cohort

Integrated care and dementiafrom 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

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

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

Patient story

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

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.”

• 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.”

Carers

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.”

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?”

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.”

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

Screening

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

Blood tests

• FBC• U&E• LFT• Hba1c or glucose• Cholesterol• B12/folate

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.

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

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.”

Why me?

• Be more vigilant when seeing patients• Better understanding• Part of a team• Better Sign posting• Reassurance• Anything else?

THANK YOU