Dementia Research. Dr Simon Evans Principal Research Fellow Association for Dementia Studies. Hereford University Centre September 2017

Transcription

1 Dementia Research Dr Simon Evans Principal Research Fellow Association for Dementia Studies Hereford University Centre September 2017

2 Outline The Association for Dementia Studies About Dementia Dementia Research Summing Up Questions & Discussion

3 The Association for Dementia Studies at Worcester University

4 Association for Dementia Studies (est. 2009) Developing evidence-based person-centred practical ways to help people live well with dementia 1. Home, Communities and Diversity: living well & adjusting post diagnosis 2. Skilled Care and Leadership for Complex Care Services 3. Enriching Lives through Creativity, Arts, Nature and Sport 4. Person-Centred Design and Technology

5 H D R C Housing and Dementia Research Consortium

6 6 Dementia is caused by a variety of diseases and injuries that affect the brain, such as Alzheimer's disease or stroke. Dementia is a syndrome due to disease of the brain, usually of a chronic or progressive nature, in which there is disturbance of multiple cortical functions, calculation, learning capacity, language and judgement. World Health Organisation (2015)

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8 8 FRONTAL LOBE: Our Social Controller Social Behaviour Social Rules Personality Problem Solving. Control of how we express our emotions. Judgement TEMPORAL LOBE Memory including long term, short term and visual memory Helps with attention Helps with recognising things, for example, vegetables in the supermarket. CEREBELLUM & BRAIN STEM Co-ordinates movement of body including the eyes. Posture and balance. Swallowing THE PARIETAL LOBE- Involved with Language Knowing what things are for. knowledge of numbers THE OCCIPITAL LOBE Involved in Vision Reading e.g. following the lines of text while reading. Spatial Awareness Recognition of familiar faces. Depth perception

9 9 Dementia and Change Changes in the brain which may affect: Memory Language Visual perception Comprehension Orientation to time and space Mobility and fine motor skills Recognising objects Learning new skills Changes to daily life which may impact on: Shopping Driving Managing finances Using public transport Cooking Social contact Household activities Self-care

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12 12 Co-Morbidities Visual impairment Hearing impairment Learning Disabilities & Downs Syndrome Mobility & Falls Pain Levels

13 If you ve met one person with dementia, you ve met one person with dementia.

14 The Economic Costs 26 billion cost to UK 55 billion by 2040

15 Research Funding

16 Recent Improvements National Dementia Strategy 2009 Prime Minister s Dementia Challenge Alzheimer s Society awareness raising New Dementia Research Institute Dementia Discovery Fund

17 17 y Current outputs: Prime Minister s Champion Group Dementia friendly Financial Services Charter Dementia friendly Employers Guide Dementia friendly Arts Venue Guide Dementia friendly Technology Charter Accessing and Sharing Information publication Maintaining Personal Wellbeing pledge Dementia friendly Retail Guide Dementia Friendly Church Guide Upcoming projects/outputs: Housing Charter Dementia friendly Faith Guide Dementia friendly Heritage Guide Dementia friendly Cinema Guide Dementia friendly Air Transport Dementia friendly Sport Venues Guide

18 Types of Dementia Research Cure Prevention Care

19 Looking for a Cure: Tau, Tangles & Plaques

20 What would a cure mean? Delaying the onset of dementia by 5 years would mean 469,000 less people living the disease by ,000 fewer informal carers by 2030 savings of 21.2bn a year by 2050

21 Drug Development The estimated cost of developing a new drug is 1.15 billion It takes on average 12.5years There are 289 ongoing clinical trials for dementia in the UK There are 4521 for cancer

22 Cure

23 Cure The team of German scientists examined how certain proteins which can collect in the brain alter their behaviour with ageing. They believe their discovery could pave the way for new approaches to tackling such ageing seeds. Dr Frank Baumann, of the Hertie Institute For Clinical Brain Research in Tubingen, where the study was carried out, said it was now important for such proteins in the brain to be mapped. If this could be done in both healthy people and those with dementia, it might hold the key to tackling the disease.

24 A new approach? University of California study combined existing cures - e.g. anti-inflammatory drugs, insulin - with interventions to improve diet, increase exercise, manage stress and improve sleep. Improvement in participants memories Small study, evidence anecdotal

25 Prevention "Though it's not inevitable, dementia is currently set to be the 21st Century's biggest killer. We all need to be aware of the risks and start making positive lifestyle changes." Dr Doug Brown, Director of Research, Alzheimer's Society

26 Lifestyle risk factors Mid-life hearing loss - responsible for 9% of the risk Failing to complete secondary education - 8% Smoking - 5% Failing to seek early treatment for depression - 4% Physical inactivity - 3% Social isolation - 2% High blood pressure - 2% Obesity - 1% Type 2 diabetes - 1% Source: Lancet Commission on dementia prevention, intervention and care

27 But The other 65% of dementia risk is thought to be potentially nonmodifiable.

28 Other possible factors Stressful events in life can age the brain by at least four years; High doses of some over-the-counter medicines including hay fever and sleeplessness; Dementia rates are higher near busy roads

29 Where do you want to live when you are older?

30 What people tell us 85% of older people want to live in their own homes 35% because it was near shops; 32 % because it was close to work; 19% because it was close to family. Why not supported housing? 40% because they would feel less independent; 28% feared losing access to their community; 26% feared being cut off from family

31 Settings and research projects Care homes Specialist housing Mainstream housing

32 Care Home Research

33 Prescribing Trends Donepezil 60,000 people a year Rivastigmine 30,000 Memantine 14,600 Galantamine 10,000

34 Potential Side Effects of Antipsychotics Common Symptoms Parkinsonism (shaking and tremors) Reduced mobility Sedation Ankle swelling Banerjee, 2009 Increased risk of Chest Infections Pulmonary Embolism (80% Increase) Stroke (300% increase) Faster cognitive decline (200% increase) Mortality (200% increase)

35 FITS into Practice Focused Intervention Training and Support

36 FITS into Practice: Findings Improvements in knowledge/attitudes of Dementia Care Coaches 30% of residents had their anti-psychotic prescription stopped Residents were more alert, active, communicative and eating and sleeping better Improvements in physical environment, staff experience, relationships with family and external professionals

37 Dementia and The Arts The Courtyard, Hereford Making of Me Dance, Drama & Poetry sessions in 16 care homes Mentors, Artist, Champions, Residents Creative Ageing Programme Pop up projects, mentor projects Emerging Themes Increased wellbeing Greater engagement Skills & Sustainability Organisational challenges

38 Green Dementia Care Many benefits for people with dementia Exercise, relaxation, sensory stimulation, social interaction, self-confidence, etc. Connections with Nature: Exploring opportunities for people living with dementia in extra care and residential care to experience nature;

39 Namaste Care New Research programme Delivering Excellent Care Every Day for People Living with Advanced Dementia: Namaste Care Intervention UK

40 Namaste Care Embedding Excellence Namaste is a Hindu greeting meaning to honour the spirit within. Namaste Care is the name for a multi-component intervention that combines best practice in the physical, sensory and emotional care for people living with advanced dementia. In care homes it is combined into a daily programme and delivered by staff working with groups of 8-10 residents at a time.

41 New models of housing Extra Care Housing & Retirement Villages

42 Housing and Dementia Housing with Care can support quality of life for people living with dementia Accessible environments On site amenities Activities and Social interaction Challenges include Advanced dementia / home for life Attitudes of other residents Staff skills and training

43 43 The Association for Dementia Studies & The King s Fund Developing supportive design for people with dementia

44 Communities Two thirds of people with dementia live in ordinary housing; One third live on their own; Lack of post-diagnostic support.

45 Meeting Centre Support Programme in The Netherlands, Italy, Poland and the UK

46 Meeting Individual Needs Clients : Recreational and social activities, such as reading the newspaper, painting, singing, preparing lunch and shopping - group activities or adapted to individual preferences. Training and therapy, such as reminiscence, psychomotor therapy and music therapy. Family carers : Informative meetings. Discussion groups. Assistance with practical, emotional and social issues. For both clients with dementia and their carers : Weekly consulting sessions. Social activities and excursions.

47 Adaptive tasks Dealing with own disablities. Preserving an emotional balance. Maintaining a positive self-image. Preparing for an uncertain future. Developing and maintaining social relations. Dealing with treatment and institutional environment. Developing an adequate relationship with professional staff.

48 Meeting DEM Evaluation Findings Greater improvement in Quality of Life Slight reduction in agitation and aggression Decreased depression Increased sleep disturbance Reduced carer burden Cost effective?

49 Aids, Adaptations, Technology Enabling people to remain at home Supporting quality of life and reducing costs Dementia Dwelling Grants Not means tested 149 recipients so far Average of 3 items per person = 114 When best to offer?

50 TAnDem: The Arts and Dementia Doctoral Training Centre ( ) funded by the Alzheimer s Society Partnership between the Association for Dementia Studies at the University of Worcester and the Centre for Dementia, University of Nottingham

51 TAnDem PhD Topics Evaluating Arts Interventions in Residential Homes. International Taxonomy of Arts Interventions Challenges of evaluating arts and creative opportunities for people living with dementia How do different individual engage with arts opportunities? Personalised play-lists

52 Family Carers 700,000 family members/friends support someone living with dementia 39% of carers spend more than 100 hours per week caring for someone with dementia % of carers for someone with dementia are women 55% say they look after themselves well enough 61% say they have no or not enough support 35% would like more social contact

53 Dementia Carers Centre Royal Surgical Aids Society National Resource Centre for Carers of People with Dementia Literature review Positive and Negative experiences Impact on health and wellbeing of carers Financial consequences Can put stress on relationships and friendships

54 Summing Up Person- centred care Research Funding Benefits and Costs Join Dementia Research

55 Thank you for listening Dr Simon Evans University of Worcester UK Association for Dementia Studies Photos from Droitwich Spa Meeting Centre