Dementia

Top 10 priorities

1. What are the most effective components of care that keep a person with dementia as independent as they can be at all stages of the disease in all care settings?
2. How can the best ways to care for people with dementia, including results from research findings, be effectively disseminated and implemented into care practice?
3. What is the impact of an early diagnosis of dementia and how can primary care support a more effective route to diagnosis?
   
   Particular questions were raised about the impact of early diagnosis on:
   
   - Health-related outcomes for people with dementia and their carers (including impact on the progression of the disease and life expectancy, mental health, quality of life, attitudes of healthcare professionals to treatment for people with dementia, and on outcomes for carers, including quality of life and mental health).
   - Wider outcomes in society for people with dementia and carers/family (including financial planning, insurance issues, employment prospects, independence, access to other healthcare services, driving).
   - Health and social care services.
   
   Particular questions about more effective routes to diagnosis in primary care included:
   
   - Routes to faster referral to specialists, where appropriate.
   - The best way to communicate a diagnosis of dementia, including who is the best person to communicate the diagnosis and where it should be delivered; how best to involve relatives and carers taking confidentiality into account.
   - The psychological impact of a diagnosis of dementia on the person and carers.
    
4. What non-pharmacological and/or pharmacological (drug) interventions are most effective for managing challenging behaviour in people with dementia?
   This question included alternatives to anti-psychotic drugs; activities and stimulation; person-centred and behavioural care techniques; which therapies are most effective in different care settings; the effectiveness of involving carers (family/home carers or care staff); effectiveness for different sub-types of dementia.
5. What is the best way to care for people with dementia in a hospital setting when they have acute health care needs?
   This question included uncertainties about the effectiveness of a coordinated, specialist unit for people with dementia within an acute hospital, instead of admission to usual hospital acute ward and the impact on length of stay, the experience and outcomes for the person with dementia, progression of the disease, cost-effectiveness and use of the ambulance services (potential to reduce transfers between wards/hospitals).
6. What are the most effective ways to encourage people with dementia to eat, drink and maintain nutritional intake?
   This question included the role of professional and lay carers; whether assistance with feeding/drinking improves other outcomes e.g. weight, physical functioning, behavioural symptoms, progression of the disease; effectiveness of food supplements and any adverse effects of food supplements; potential role of a trained hydration team in hospitals and other care settings; role of speech therapy in improving/maintaining swallowing and chewing reflex.
7. What are the most effective ways of supporting carers of people with dementia living at home?
   Particular questions were raised about:
   
   - The specific type of help that is effective, including questions about support from paid carers, consistency of paid care, help during the night, specialist care provider service for home care, fast support response, training for family carers, day care centres, respite care, provision of information, help with paperwork, transport, telephone helplines.
   - How health and social care services can best be coordinated and accessed including to improve speed of access to support, one point of contact rather than several agencies, improved communication between services.
   - Outcomes asked about were: the factors that enable people with dementia to stay at home as long as possible and delay institutionalisation, maintain quality of life for people with dementia and carers, maintain physical and mental health for carers.
8. What is the best way to care for people with advanced dementia (with or without other illnesses) at the end of life?
   This question included references to alternatives to withdrawing food and drink.
9. When is the optimal time to move a person with dementia into a care home setting and how can the standard of care be improved?
   Particular questions included whether it is better to move a person with dementia to a care home at an earlier or later stage of the disease for outcomes including quality of life, trauma to the person with dementia, behaviour, physical function, costs; consideration of conditions for staff (salaries, career structure and training) in improving care; monitoring of standards of care, characteristics of a good care home.
10. What are the most effective design features for producing dementia friendly environments at both the housing and neighbourhood levels?
    This question included the consideration of design/adaptation of housing e.g. signage, scenery, space & light; for different cultural and ethnic minority groups; design features that best support and enable people with dementia and carers to maintain quality of life, manage symptoms, minimise behavioural problems, slow progression of the illness and allow people to stay in their own homes for longer.

The following questions were also discussed at the workshop:

• Can the onset of dementia be prevented or delayed by dietary or nutritional factors? What specific foods or components of diet increase/decrease the risk of developing dementia? Including: types of diet (eg, Mediterranean, low fat), dietary patterns, components of diet (eg, macronutrients, caffeine) types of food (eg, fruit and vegetables), vitamins, minerals or nutritional/food supplements and drinks. For different sub-types of dementia eg, Alzheimer's vascular, Lewy Body dementia. In people with a family history/genetic risk factors for dementia. The effectiveness of diet/nutrition started in older age compared to earlier in the life course.
• Does high quality care from carer/care staff improve outcomes for people with dementia? What are effective ways to implement such high quality care in all settings, including care homes and hospitals? Including: Care that considers person-centred care, behavioural care interventions and kind, respectful and dignified caring. Effect on quality of life, behaviours that challenge, and progression of the disease.
• Are acetylcholinesterase inhibitors (donepezil, galantamine, rivastigmine) or memantine effective and cost-effective for people with dementia and its sub-types)? In terms of: improving quality of life. Reducing non-cognitive symptoms (including challenging behaviour). When used long term (more than 6 months). For slowing progression of dementia. In treatment of severe dementia. Compared to non-pharmacological therapies. Which are most effective when compared to each other.
• What are the most effective management approaches and models of care for people with concurrent dementia and vision problems/sight loss in all settings and at all stages of the disease?
• What diagnostic tests/methods/strategies are clinically effective (and cost-effective) to improve diagnosis/early diagnosis of dementia? Including: In different settings. Consideration of scans, biomarkers, blood tests, cognitive tests, family history, new techniques. Consideration of care/medical pathways. Different sub-types of dementia. For different cultural and ethnic groups.
• What interventions/techniques/facilities/staff training are of most benefit in improving the quality of life for people with dementia and their carers in all settings and at all stages of the disease?
• What are the best ways to care for people from ethnic minority groups with dementia in all care settings?
• What are the most effective methods to improve the awareness and attitudes of all health and social care professionals towards people with dementia in all settings and improve their understanding of the challenges faced by carers and families?

Key documents

Dementia PSP Protocol