Sensory Changes and Dementia

1. Sensory Changesand Dementia Agnes Houston MBEKate Robertson, Outside the BoxMarch 2019

2. Agnes Houston MBE • I was diagnosed with Alzheimer’s 13 years ago. • One of the biggest challenges were the changes to my senses. • I was offered very little information from my doctors so I began to research and campaign for better care which I continue to do. • This campaigning has taken me across the world and I have been able to work with some of the leaders in innovative dementia care. • My recent personal outcome was accessing SDS support, this is a work in progress.

3. Dementia and Sensory Challenges booklet • Dementia and Sensory Changes booklet– Taste and Smell • Winston Churchill Memorial Trust Fellowship • Design School • Dementia Sensory Handbook • Dementia Self-Management booklet • Dementia Diaries • Deep – Dementia Engagement and Empowerment Project

4. Solutions • Quiet space away from environmental noise • Sensory-friendly spaces (Autism Friendly places and times). • Plan ahead and request quiet corners without speakers / away from kitchens etc. • Ear Plugs / Ear Defenders • Reflective listening – repeating • ULL – Uncomfortable Loudness Levels test • Who can help? • Allies Health Professionals – Occupational Therapists • Audiologists & Hearing Therapists Hearing • Challenges and Impacts • Emotional Impact - Distress and agitation • Drained from dealing with environmental noise • Public spaces can be intolerable – shopping centres / hospitals/ public toilets • Negotiating outdoor / public spaces – crossing roads • Social Impact – isolation • Hobbies – music / films etc. • Hearing Aids • Changes • Auditory Hallucinations • Hypersensitivity – Hyperacusis, intolerance to daily noise • Pain responses to noise • Auditory overload • ‘Brain Deafness’ – difficulty processing sounds

5. Solutions • Bright even lighting to reduce shadows • Plain background and carpets • Highlighted stair edging • Audiobooks / colour overlays • Signs with images and words • Who can help? • RNIB Locality Officer • NHS Allied Health Professionals – Occupational Therapists • Optician / Ophthalmologist • Scottish War Blinded (veterans) Sight • Challenges and Impacts • Lack of understanding from others • “Black mats look like holes” • Steps and stairs • Shadows and reflections • Watching tv/ reading • Signs and directions • Recognising items • Fearful to go out • Changes • ‘Brain Blindness’ • Processing visual information • Spatial Awareness • Double Vision / Ghosting • Visual Hallucinations • Depth Perception

6. Touch • Challenges and Impacts • Scalds and burns • Some people can no longer tolerate certain touch – hugs / haircuts causing distress. • Some people can become more affectionate. • Impacts on relationships and social interaction • Interaction with care/ medical professionals can be distressing e.g. dentist, podiatrist • Personal Care: haircuts, shaving, manicures, showering etc. • Solutions • Home living aids for taps, cookers etc. • Explore what could work well for the individual e.g. use towels for showering. • Explore preferences for active/passive tactile stimulation. • Sensory diary to share with family, friends, care professionals. • Who can help? • Allied Health Professionals – Occupational Therapists • Changes • Trouble differentiating between hot and cold. • Heightened sensations • Changes in sensations • Can become painful or unpleasant. • Changes in preferences and levels of affection

7. Smell • Challenges and Impacts • Smell and taste closely linked • Headaches from specific smells • Avoidance of certain places • Public spaces / transport • Eating / cooking • Food waste – Financial impact • Social Impacts – isolation • Emotional distress from phantom smells (Burning) • Solutions • Clearly label expiry dates • Identify phantom smells – moves from place to place. • Scent-free spaces • Scent specific check-list to eliminate possible sources. • Who can help? • Fire Scotland – Home Fire Safety Visit. Link smoke detector with local service. • Changes • Olfactory hallucinations / Phantom Smells – ‘Phantosmia’ (usually unpleasant). • Can continue to change • Food can smell ‘off’ • Heightened sense of smell • Loss of smell

8. Taste • Solutions • Grazing / sharing plates • Fruit/ Herbal teas • Sweet sauces, chutneys etc. • Keep and share a taste diary • Blue crockery • Who can help? • Allied Health Professionals – Speech Therapists / Nutritionists • Food Buddies Resources • Chef Peter Morgan Jones • Changes • Tastes can continue to change • Lose sense of taste • Savoury foods can taste bland • Preference for sweeter foods • No longer enjoy favourite foods • Food and drinks can taste ‘off’ • Intolerable textures • Flavours become overpowering • Challenges and Impacts • Loss / change of appetite • Change of eating habits • Cooking / preparing foods • A chore / no enjoyment • Snacking – poor nutrition • Social Impact • Emotional Impact

9. General Information • People can experience multiple sensory changes at one time, they don’t happen in isolation to one another. • Sensory overload can cause disorientation,and it can be emotionally overwhelming and draining. • The various symptoms can change, so people may react to different triggers at different times. • This can also mean that the physical and emotional response can also vary. • Some people have experienced these changes before they have a dementia diagnosis. • What can we do now? • Encourage people to keep a sensory diary – what are the changes? / when do they occur? / where do they occur? / what is the response? • Share this information (with permission) with those that can offer support – friends, family, Doctors, care professionals and Allied Health Professionals. • Reassure that they are not imagining these changes and that they are not the only ones experiencing these changes. • Think Sensory, Ask Sensory – if you suspect someone might be experiencing sensory changes ask them about their experiences. • Think about trying some of the practical changes that could help (see Hints & Tips Film)

10. More information… • Agnes on Twitter: @agnes_houston https://twitter.com/agnes_houston • Dementia & Sensory Challenges Booklet http://otbds.org/wp-content/uploads/2017/06/Dementia-and-Sensory-Challenges.pdf • Dementia & Sensory Challenges Film https://www.youtube.com/watch?v=U_L2107EweQ&t=637s • Sensory Changes and Dementia: Taste and Smell Booklet http://otbds.org/wp-content/uploads/2018/05/Sensory-Changes-and-Dementia-Booklet-Final.pdf • Sensory Changes and Dementia: Hints and Tips Film - https://www.youtube.com/watch?v=4DZe2e8Eq3c • WCMT Fellowship Report –https://www.wcmt.org.uk/sites/default/files/report-documents/Houston%20A%20Report%202016%20Final.pdf • Outside the Box – www.otbds.org • Food Buddies – http://otbds.org/projects/food-buddies/

11. More information… • Life Changes Trust Publications - https://www.lifechangestrust.org.uk/publications • Dementia Engagement and Empowerment Project (DEEP) - http://dementiavoices.org.uk/ • HammondCare: UK Dementia Centre – https://www.dementiacentre.com/ • Peter Morgan Jones cookbooks – http://www.hammond.com.au/shop/food-culture • Dementia Diaries – https://dementiadiaries.org/ • Scottish Dementia Working Group - http://www.sdwg.org.uk/ • Dementia Friends - https://www.dementiafriends.org.uk/ • Alzheimer Scotland - https://www.alzscot.org/ • Edinburgh Centre for Research on the Experience of Dementiahttps://www.ed.ac.uk/health/research/e-cred • Scottish War Blinded (support for veterans) - https://www.royalblind.org/scottish-war-blinded

12. Contact Us… Kate RobertsonCommunity Development Adviserkate@otbds.org07841015945 Outside the BoxDevelopment Supportwww.otbds.org Twitter - @OtBcommunities Facebook - @otbds Scottish Charity: SC035317Company Number: 265077