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My Crooked House Speaker: Ann Pascoe NDCAN National Dementia Carers Action Network Slide 2 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 Slide 3 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 Slide 4 Learning Outcomes Outcome I To understand a person with dementia 4 NDCAN Slide 5 Rural East Sutherland Slide 6 Geographically Challenging NDCAN Slide 7 My husband Andrew Slide 8 Lollipop Slide 9 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 Slide 10 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 Slide 11 Learning Outcomes Outcome II To understand how living with dementia impacts on the family and particularly on the carer 11 NDCAN Slide 12 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 Slide 13 Carer Fear At point of diagnosis Traumatised Spouses/children before being carers During the journey Vulnerable adults Negligence Care homes POA NDCAN Slide 14 Fantasy world Reinvents the truth Professionals call it confabulation I call it Andrews fantasy world You really cant 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 doesnt know hes doing it NDCAN Slide 15 Cricket on a village green Slide 16 Playing the bagpipes Slide 17 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 dont correct him dont contradict him dont back him into a corner NDCAN Slide 18 Learning Outcomes Outcome III To better understand how Care & Repair can support dementia families 18 NDCAN Slide 19 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 Slide 20 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 Slide 21 Reality Check We need local authority to be realistic Cant meet all the standards for care Too many rules and regulations Ordinary families living in ordinary houses But theyre 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 Slide 22 First Changes Slide 23 Soft Lighting NDCAN Slide 24 Sensible Lighting NDCAN Slide 25 Contrasts NDCAN Slide 26 Be Prepared Slide 27 Move the bedroom Slide 28 Be Prepared NDCAN Slide 29 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 Slide 30 Garden Slide 31 Fundamentals first Internet/Broadband Smart TVs for all medical appointments GPS tracking technology Skype Robots Companionship To clean Pets NDCAN Technology Slide 32 Group Housing in Japan Slide 33 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 Stirlings Dementia Centre NDCAN Slide 34 Key Message These are our homes Not institutions People living in them Are our families Not service users or clients 34 NDCAN Slide 35 Workshop Outcomes How can we better support dementia families? In the home? In communities? With technology? 35 NDCAN