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 brain Most common type is multi-infarct dementia (MID) where brain is damaged by small strokes Arteriosclerotic dementia - reduced oxygen supply to the brain (chronic ischaemia).

Communication Speaking Choose words Put words in right order Put sentences in right order Listening We 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 events Separation anxiety Stress Loss of goal recognition Disorientation Fear or alarm Feelings of incompetence Communication difficulties Pain or discomfort Reality confrontation Disinhibition Memory loss 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.”