PRIDE - Promoting Independence in Dementia

People with dementia lose much more than just their memory and daily living skills. They can also lose their independence, their dignity and status, their confidence and morale, and their roles both within the family and beyond. They can often be seen as a burden by society, their families and even by themselves, and feel unable to contribute to society, and they lack opportunities to reciprocate by doing things for others. This adds to the stigmatision of people even if they only have mild memory problems. The focus of this study is promoting independence in dementia which could have substantial benefits for the people with dementia, their families, and NHS and social care. This should translate into major economic (eg reduced costs of care) and societal benefits.

Dementia is a national priority and this proposal addresses the Prime Minster's commitment to dementia research and the need to improve community support. In the UK over 800,000 older people have dementia costing the nation over £17 billion a year through the provision of health and social care services. Dementia has profound effects on family carers who through their actions save the UK economy over £6 billion a year. This means there is a need both to better understand the impact of social and lifestyle factors on the broader ageing population at risk of dementia, and to promote independence and quality of life for people with dementia.

This study aims:
(a) to identify how social and lifestyle changes may help reduce risk of developing dementia and disability and to better understand the social consequences of dementia.
(b) to develop and evaluate an effective social intervention to support independence and quality of life for people with early stage dementia and their carers.

The first aim will be addressed using the information from the English Longitudinal Study of Ageing (ELSA) cohort which has followed up over 10,000 older people biennially over ten years, collecting information about their health, wealth, lifestyle and social activities. Our initial analysis of the data set indicates that the use of email/internet may reduce cognitive decline and that staying physically active can help improve people's daily living skills. We will do further analyses looking at the frequency of dementia amongst older people in the community and the potential impact of changes in lifestyle (eg exercise, use of computers) on how cognitive abilities may change over time. In the next two ELSA surveys (2014 and 2016) we will ask people about their expectations of ageing, including memory loss and dementia, the associated fear and stigma and what would make it more or less likely for them to seek help if needed. We will explore the concerns and expectations people have (eg loss of identity and loss of independence) at the point of referral to memory services, at the point of diagnosis, and for the following two years. We will also investigate their experiences in terms of loss of role and quality of life.

The second aim will be investigated by using an in depth consultation with people with dementia and their carers and an appraisal of the scientific evidence to develop an evidence based social intervention designed to promote independence and support lifestyle changes most likely to benefit cognition (eg physical activity, use of computers) delivered by a dementia advice worker. In a large clinical trial of memory services across the UK, the intervention will be evaluated in comparison to usual care to evaluate potential benefits to independence and quality of life. Lastly, we will determine the best ways to implement the intervention more widely and to publicise the results. We will ensure that there are training and development opportunities for all grades of researcher from PhD students to senior academics, so that we can develop capacity for future research in gerontology and dementia care.

PRIDE will lead to substantial benefits across a wide range of stakeholders including the scientific and public health communities, policy makers, commissioners and service planners, the voluntary sector, carers, people with dementia, service providers, and international organisations. Initial benefits:

(a) better public and scientific understanding of the social and cultural impact of dementia, the role of lifestyle factors, and the impact on the changes in cognition and activities of daily living across time; the associated economic and social benefits; the potential impact on the future prevalence of dementia.

(b) improved public health guidance on lifestyle approaches to reduce risk of dementia (eg physical exercise, cognitive stimulation), and updated policy and practice (eg updated NICE guidelines, update of National Dementia Strategy, and commissioning guidance).

(c) better public understanding of lifestyle and social factors in dementia should lead to reduced fear and stigma, and a more proactive approach to seeking help by people worried about their memory and their families.

(d) The programme could within 5 years provide the evidence required to demonstrate to managers and policy makers that the intervention was effective, leading to changes in the way older peoples' services are organised and opportunities for national implementation. This would promote independence and quality of life, and reduce service use for people with dementia and their carers. The applicants' networks and the key drivers to influence policy means there could be extensive implementation of the social intervention by memory services across the UK.


Future benefits:

(e) if as expected the social intervention leads to improvements in independence, activities of daily living and quality of life this should translate into major economic benefits (eg reduced costs of care) addressing the key policy concern of improved resource use through innovation in a time of economic stringency. Societal benefits will also accrue for people with dementia (and their carers) who will be able to retain their independence for longer and experience reduced stigma about the condition.

(f) Services across the UK and Europe use information and support interventions and because of the comprehensive approach including a major trial and implementation study, the social intervention could rapidly become widely used, as a clinical/cost-effective, standardised, and feasible intervention providing effective and better targeted support and information at an early stage. We will network with other countries to encourage them to translate and evaluate the intervention aiming for 5 major languages within 3 years of completion. Countries with the capability to adopt the intervention quickly include the Netherlands and Australia. We will explore the feasibility of the intervention in Brazil, India and China in the context of different cultures and health systems.

(g) There is potential for major policy impact in Europe and elsewhere. The INTERDEM network includes 20 European Nations, has close links with the European Commission and Alzheimer Europe. This means it is in an excellent position to promote and disseminate the findings and influence EU policy.

(h) The INTERDEM Academy will have an international impact improving dementia care by fostering research collaboration, improving knowledge exchange and developing junior researchers. We will build on the successful cohort of researchers coming through major grant programmes led by the applicants (eg SHIELD, iCST, VALID - the PI also has 7 PhD students) programmes, and other major studies from the UK and the wider INTERDEM community.