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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
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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 dementiaDementia 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 dementiaCan 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 understoodOnly 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).
Speaking Choose wordsPut words in right orderPut sentences in right order Listening We hear Brain recognises and ‘decodes’ We have to understand then react and formulate an appropriate reply Communication
Communication difficulties Repeats things already saidAsks the same question again & again Says things which aren’t real or trueSlowness at respondingMispronounces 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 I need to find my mother! You are 80! What age would your mother be!?
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
Aggression/irritability Uncooperativeness Apathy Shouting/swearing Repetition/questioning Catastrophic reaction Separation anxiety ‘Wandering’ Hallucinations Delusions Disinhibition Sundowning Continence problems Accusations Behaviour in dementia
What can cause challenging behaviour? Stress Misunderstanding events Separationanxiety Loss of goal recognition Disorientation Communicationdifficulties Fear or alarm Feelings of incompetence Memoryloss Pain or discomfort Disinhibition Searching Reality confrontation
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 Behaviour – making things worse
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.”