My Crooked House Speaker: Ann Pascoe NDCAN National Dementia Carers Action Network

What is NDCAN? National Dementia Carers Action Network campaigning group supported by Alzheimer Scotland Members all have experience of caring for someone with dementia – husbands, wives, children, siblings, grandchildren, friends… We raise awareness of issues affecting carers of people with dementia Influence practice and policy at a national level

Learning Outcomes Outcome I To better understand a person with dementia Outcome II To better understand how living with dementia impacts on the family particularly the carer Outcome III To better understand how Care & Repair can support dementia families 3 NDCAN

Learning Outcomes Outcome I To understand a person with dementia 4 NDCAN

Rural East Sutherland

Geographically Challenging NDCAN

My husband Andrew

Lollipop

What is dementia? Dementia an umbrella term Covering over 100 conditions An illness that affects the brain Makes it harder to remember things or think as clearly as before Short term memory Long term memory Last to go is creativity and imagination Can affect every area of human thinking, feeling, behaviour Each person is different 9 NDCAN

Telltale signs Loss of short-term memory Retention of long-term memory Loss of reason and judgement Forgetting how to do things for yourself Forgetting your very identity NDCAN

Learning Outcomes Outcome II To understand how living with dementia impacts on the family and particularly on the carer 11 NDCAN

Who are the carers? Members of family/friends voluntary Informal old and young male and female High carer stress directly related to: severity of illness giving up of own interests length of caring NDCAN

Carer Fear At point of diagnosis Traumatised Spouses/children before being carers During the journey Vulnerable adults Negligence Care homes POA NDCAN

Fantasy world Reinvents the truth Professionals call it confabulation I call it Andrew’s fantasy world You really can’t rely on what he is When he forgets things he makes them up as he thinks they should be or how he would like them to be He doesn’t know he’s doing it NDCAN

Cricket on a village green

Playing the bagpipes

Step back Step back when Andrew fantasizes he is not doing this on purpose or to annoy me Rather a symptom of his illness Always see the man look beyond the symptoms smile and let him be don’t correct him don’t contradict him don’t back him into a corner NDCAN

Learning Outcomes Outcome III To better understand how Care & Repair can support dementia families 18 NDCAN

Told me something wrong long before diagnosis: Light fittings/switches Building mistakes Most things off kilter or crooked Warns me as Andrew changes: Struggles to see Falling/stumbling Struggles up stairs Struggles to use the bath My Crooked House

‘ Not only do people with dementia suffer memory loss, they are no longer able to make memories. Thus somebody with dementia in any new environments is going to have spectacular difficulty …’ Dr Shibley Rahman in his book Living Well with Dementia: the Importance of the Person and the Environment for Wellbeing. Keep us at home …

Reality Check We need local authority to be realistic Can’t meet all the standards for care Too many rules and regulations Ordinary families living in ordinary houses But they’re our family homes not institutions We want to keep our person with dementia at home Situation is constantly changing Often needs quick adjustments Costs money We need help to plan for the future Need support to keep our people at home from Preventative home care/Crossroads support (not only crisis) Professionals dementia friendly communities play key role 21 NDCAN

First Changes

Soft Lighting NDCAN

Sensible Lighting NDCAN

Contrasts NDCAN

Be Prepared

Move the bedroom

Be Prepared NDCAN

Recognise and embrace the challenges that a life with dementia presents to people with dementia and their carers, enabling them to live life to its full potential: Awareness raising Tackle myths/stigma Social inclusion NDCAN Dementia Friendly Communities

Garden

Fundamentals first Internet/Broadband Smart TVs for all medical appointments GPS tracking technology Skype Robots Companionship To clean Pets NDCAN Technology

Group Housing in Japan

Quality of Life check list Social interaction Talk to neighbours Take more exercise Good diet and hydration Access information and advice Improve light levels Reduce noise levels Assistive technology Make adaptation to adapt home Respite and support Integrated/proactive services Manage any physical illness Rehabilitation from hospital Stirling’s Dementia Centre NDCAN

Key Message These are our homes Not institutions People living in them Are our families Not service users or clients 34 NDCAN

Workshop Outcomes How can we better support dementia families? In the home? In communities? With technology? 35 NDCAN