Dementia friendly communities:working in partnership

Victoria Macleod, Dementia Advisor

Scotland's national organisation helping people with dementia, their families & carers

We aim …

• to be the national and local voice

• to improve public policies

• to provide and secure high quality services

…for people with dementia and their partners, families and carers

We operate in:

Argyll & Clyde

Dumfries & Galloway and Ayrshire

Glasgow, E. Dunbartonshire & Lanarkshire

Grampian, Tayside & Shetland

Highland, Western Isles & Orkney

South East Central (Lothian, Borders, Fife & Forth Valley)

Role of the Dementia Advisor

• local point of contact

• help with planning ahead

• navigating through maze of services

• information on dementia

• signposting to other services

• linking in with other local services

• supporting local communities

What is dementia?

An illness that causes damage to the brain

There are different types of dementia

Dementia is progressive, so it will affect you more as time goes on

Important points…

• Every person with dementia is different and may experience dementia differently

• Not everyone will have same symptoms and they do not necessarily appear in any particular order

People with dementia will have …

Good days and bad days – tiredness, depression, emotional state & other health problems will have impact on coping with dementia

Can even depend on time of day

Alzheimer’s Disease (AD)

Changes in the brain

Brain cells are gradually damaged one by one, causing brain shrinkage

Temporal lobes most damaged – important in storing recent memories

Alzheimer’s Disease (AD)

• In over 95% of cases, cause is not fully understood

Only few, rare families where Alzheimer’s is definitely inherited by passing on of faulty gene (less than 5% of all people with AD)

Vascular dementia

Second most common cause of dementia – caused by impaired blood supply to brainMost common type is multi-infarct dementia (MID) where brain is damaged by small strokesArteriosclerotic dementia - reduced oxygen supply to the brain (chronic ischaemia).

Communication

Speaking

Choose words

Put words in right order

Put sentences in right order

ListeningWe hear

Brain recognises and ‘decodes’

We have to understand then react and formulate an appropriate reply

Communication difficulties

Repeats things already said

Asks the same question again & again

Says things which aren’t real or true

Slowness at responding

Mispronounces words

Communication difficulties

Difficulty writing

Difficulty following television & reading

Conversation wanders

Insensitive to other peoples’ conversation needs

Unable to explain things

Avoid ‘vague’ questions

What would you like?

???!

Avoid saying too much at once

After this we’ll go to that new place I

mentioned earlier, then

we’ll get something to

eat. Have you got your scarf as it’s cold outside and it’s a bit of a walk?

Eh?!

Respond to the emotion

You are 80! What age would your mother be!?

I need to find my mother!

Some useful communication tips• Be calm and patient• Face the person. Speak clearly and slowly• Use short simple sentences and say exactly

what you mean• Try to get one idea across at a time• Allow plenty of time for the person to take in

what you say and to reply• Try not to confuse or embarrass the person by

correcting them bluntly• Use questions which ask for a simple answer• Don’t ask questions which test their memory• Use facial expressions and hand gestures to

make yourself understood

Behaviour in dementia

Aggression/irritability

Uncooperativeness

Apathy

Shouting/swearing

Repetition/questioning

Catastrophic reaction

Separation anxiety

‘Wandering’

Hallucinations

Delusions

Disinhibition

Sundowning

Continence problems

Accusations

What can cause challenging behaviour?

Misunderstanding eventsSeparation

anxiety

StressLoss of

goal recognition

DisorientationFear or alarm Feelings of

incompetence

Communicationdifficulties

Pain or discomfort

Reality confrontation

Disinhibition

Memoryloss

Searching

Behaviour – making things worse

• Using tricks, lies or

deception• Disempowering• Talking as you might

to a child• Labelling• Making threats• Outpacing

• Rejecting the person • Dismissing feelings• Emphasising

disabilities• Ignoring the person

Alexander McCall Smith

“Being alone in the face of suffering is not an easy thing. Not having a name for the cause of the suffering and not knowing how widely it is shared is not easy either. And worst of all must be the thought that nobody cares very much.”