PRIDE - Promoting Independence in Dementia

Lead Research Organisation: University of Nottingham
Department Name: School of Medicine

Abstract

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.

Planned Impact

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.

Publications

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Related Projects

Project Reference Relationship Related To Start End Award Value
ES/L001802/1 01/03/2014 28/02/2015 £3,402,474
ES/L001802/2 Transfer ES/L001802/1 01/03/2015 29/09/2020 £2,931,365
 
Description WP1: The English Longitudinal Study of Ageing (ELSA) a database of a representative cohort of 50-100 years of age and its Brazilian equivalent, Epiflora were investigated to examine risk factors for dementia. The ELSA database was used to track changes over time as well as associations between factors as predictors of dementia & cognitive decline and the impact of such decline on future health, family connections and social participation. Social isolation and loneliness (in contrast to being alone), hearing or visual problems and slow walking speed were associated with increased risk of dementia and cognitive decline at follow up. Computer use was also found to be a protective factor against developing dementia or declining cognitive abilities. People who stayed physically active after dementia diagnosis had less cognitive decline. Non-pharmacological interventions that can delay cognitive decline and reductions in ADL in people with dementia have a chance of being cost-effective.

WP2: Longitudinal data from interviews with 103 older people, (51 living with dementia) and 21 family carers highlighted that many older people strove to maintain their social independence and were fearful of dementia. They used strategies to mediate the impact of cognitive change and found that established routines and activities enabled continued social roles and friendships. Effective inter-dependent relationships with others supported people to venture into new social activities.

WP3: Work from the first two work packages around lifestyle factors and maintenance of social independence contributed to the intervention, as well as existing literature. Consensus expert feedback involving stakeholders was conducted to synthesise key components. Thirty-two participants provided feedback on the drafts of the intervention and manual. Seven topics for activities were included. Delivery of the intervention involved personalised profiles and plans for up to three activities were developed, implemented, and reviewed. A feasibility study was carried out at four sites across England. Participants with dementia and their supporters (34 dyads) took part in the 3-session intervention. Outcome measures were collected and dyads found the intervention acceptable.

WP4: Ninety-two participants were randomised, 45to usual care and 47 to usual care plus the PRIDE intervention. The majority of participants (n=89; 97%) were recruited from NHS services, the remaining were self-referrals. Outcome assessments were completed on all participants at baseline, while 78 completed the three month and 73 completed the 6 month follow ups. Throughout the intervention period, 11 individuals withdrew from the trial entirely, while six withdrew from the treatment. Adherence to allocated intervention was high. Outcome measures were acceptable to participants. The clinical feasibility trial found no benefit on any of the outcomes. However we are currently testing an app version of PRIDE manual.

WP5 The INTERDEM Academy was founded in 2014 as a European training network for early stage dementia researchers to help develop research capacity and their careers and is coordinated by Alzheimer Center Limburg/Maastricht University. The Academy provides expert workshops and masterclasses to develop ideas and methodological expertise, and biannual travel fellowships for PhD students and postdoc researchers allowing them to spend 3-6 months in another INTERDEM research centre. INTERDEM Academy now has 200 members from 20 different countries across Europe.
Exploitation Route These findings contribute to the development of a social intervention that will be used in the eventual RCT we hope to run. We have also developed an app based version that we are currently testing
Sectors Healthcare

URL http://www.institutemh.org.uk/x-research-/pride
 
Description The study has involved stakeholders outside of academia to shape the project, provide feedback on all aspects of the study and we have created blogposts for the wider public and presented the project to lay audiences. The study is not yet complete therefore the greater non academic impacts are to come in the following years. Final narrative impact will be reported near the end of the study.
First Year Of Impact 2016
Sector Healthcare
Impact Types Societal

 
Description Memory Clinics in Barzil
Geographic Reach South America 
Policy Influence Type Influenced training of practitioners or researchers
Impact Memory Clinic Brazil's single memory clinic has been established in Floripa under a co-applicants (AX) guidance. The memory clinic is embedded in a large clinic that serves multiple health services and is very modern and comprehensive. Now that it has been established, AX has recruited general practitioners, psychiatrists, and neurologists to all refer to the clinic, and to work together as well, which hadn't been occurring before the clinic was set up. This network grows more every year. They also take self referral, including those interested in cognitive stimulation. This has all been established on the back of PRIDE, of which all of them know, and its something they are very proud of. Since 2014 there have been 587 individuals (see table for demographics) through the clinic. Cognitive Stimulation Clinics At UNISUL AX runs 2x weekly sessions for 12 weeks to provide cognitive, social and physical stimulation for people with dementia. Anyone from the memory clinic can attend. It is also inclusive, so if the person with dementia has a grandchild for example to take care of, the grandchild is welcome to join too. The sessions are based at the university, and run by students (medical, psychology, social work, physiotherapy). The university initially objected to the students 'teaching' but this was overcome and is now well established. The session is about 1.5 hours, comprised of 3 sections. First for 20 minutes people are given a computer task (for example it was National Falls Week, so it was about fall prevention). They must log in, then search for text or pictures about the topic. Everyone has their own computers, but they often help one another. The students also help and interact with the persons with dementia. This is then followed by 20 minutes of exercise, stretching or walking, which also leads to social interaction and friendships. They then return for a final 20 minutes of computer work, in this case it was using Word to write what they learned in the first session. They are given help as needed, as educational attainment, especially for women, and computer use might be low for some. To finish off they spend 20 minutes sitting in a group sharing what they all have learned, this includes the students. They keep extensive records of attendance (and are strict about getting reason for non-attendance), and who does what (e.g., what the groups shares at the end of the class).
 
Description (DISTINCT) - Dementia: Intersectorial Strategy for Training and Innovation Network for Current Technology (DISTINCT)
Amount € 3,998,048 (EUR)
Funding ID 813196 
Organisation European Commission 
Sector Public
Country European Union (EU)
Start 04/2019 
End 04/2023
 
Description (INDUCT) - Interdisciplinary Network for Dementia Utilising Current Technology (INDUCT)
Amount € 3,878,757 (EUR)
Funding ID 676265 
Organisation European Commission 
Sector Public
Country European Union (EU)
Start 03/2016 
End 02/2020
 
Title Engagement and Independence in Dementia Questionnaire 
Description 28 items were developed for a new scale of Engagement and Independence in Dementia Questionnaire (EID-Q) following extensive qualitative work, for use with people with dementia. 
Type Of Material Improvements to research infrastructure 
Year Produced 2017 
Provided To Others? Yes  
Impact None we are aware of as yet. 
URL https://doi.org/10.1186/s12877-017-0468-6
 
Title Positive Psychology Outcome Measure 
Description Existing measures of hope and resilience were adapted to form the Positive Psychology Outcome Measure (PPOM). This is for use in people with mild dementia, 
Type Of Material Improvements to research infrastructure 
Year Produced 2017 
Provided To Others? Yes  
Impact This measure is being used in the current RCT of PRIDE 
URL https://doi.org/10.1186/s12877-017-0468-6
 
Description ALzheimer's Disease International (Hungary) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Poster presented on the sense of independence in dementia. There was much interest in the topic.
Year(s) Of Engagement Activity 2016
 
Description ALzheimer's Disease International (Hungary) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Oral presentation about the challenge of being and active citizen following a diagnosis of dementia.
Year(s) Of Engagement Activity 2016
 
Description Ageing Summit Conference oral presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Dissemination of how we found that internet use and physical actcivity can improve quality of life among older adults.
Year(s) Of Engagement Activity 2015
 
Description Alzheimer Europe Conference (Slovenia) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact An oral presentation was made about how to develop a 'self management intervention' for people with dementia in order to help them maintain independence and participations in life.
Year(s) Of Engagement Activity 2015
 
Description Alzheimer Europe Conference (Slovenia) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Poster was presented about research can involve those who suffer from dementia. Was well received and discussed with conference attendess.
Year(s) Of Engagement Activity 2015
 
Description Alzheimer's Disease Interntional Confrerence (Perth) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Poster presented on The Fear of Dementia to an international audience, including wide variety of people. Discussions were had on the findings of the research.
Year(s) Of Engagement Activity 2015
 
Description Alzheimer's Europe conference (Glasgow) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation poster presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Two posters generated questions and discussion with a mixed audience of academics, professionals, people with dementia.

Increased awareness of research programme across Europe
Year(s) Of Engagement Activity 2014
 
Description Blog 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact May 2018 blog for ESRC Understanding dementia the value of co-research
Year(s) Of Engagement Activity 2018
URL https://blog.esrc.ac.uk/2018/05/22/understanding-dementia-the-value-of-co-research/
 
Description Conference poster - ADI Chicago 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A poster presenting the PRIDE intervention development was presented. It was viewed by conference delegates (up to 500), sparking positive feedback and interest.
Year(s) Of Engagement Activity 2018
 
Description Conference talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Centre For behaviour change conference - talk Titled: Achieving engagement with an intervention to support people living with dementia: a qualitative study
Year(s) Of Engagement Activity 2018
 
Description IAGG-ER conference, Dublin 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Poster was presented about the fear of tha diagnosis of dementia. Discussion was sparked.
Year(s) Of Engagement Activity 2015
 
Description International Conference talk - ADI Chicago 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A talk (attended by approximately 150 international ) was given about the PRIDE programme, all 5 work streams. It was well received and sparked the most discussion following the group of talks in that session.
Year(s) Of Engagement Activity 2018
 
Description International Perspective on Evaluation in PPI research - Newcastle University Poster Researching together with members of the dementia centre PPI group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact International Perspective on Evaluation in PPI research - Newcastle University Poster Researching together with members of the dementia centre PPI group
Year(s) Of Engagement Activity 2018
 
Description People with dementia as research colleagues: the journey 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Blog post about how PRIDE has been involved in getting peer researchers to contribute to the project and become involved in research. The journey this took is described.
Year(s) Of Engagement Activity 2017
URL https://idea.nottingham.ac.uk/blogs/posts/people-dementia-research-colleagues-journey
 
Description Poster presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Poster: Are psychological and social interventions delivered and engaged with as planned? presented at Alzheimer's Society conference
Year(s) Of Engagement Activity 2018
 
Description Psychiatry Conference (London) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A poster was presented to disseminate our findings realted to digital literacy from the English Longitudunal study of Aging.
Year(s) Of Engagement Activity 2014
 
Description Workshop about PRIDE 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact PRIDE (all 5 work streams) were presented and discussed with two Brazilian universities' post grad students (medical, occupational health, epidemiology, psychology). How PRIDE work and their own work intersected and complimented each other was the main focus of the workshop.
Year(s) Of Engagement Activity 2018
 
Description alumni day 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Talk on lifestyles and dementia and demonstrating our work to the public
Year(s) Of Engagement Activity 2018
 
Description conference poster 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Poster on 'Sense of independence: meanings and implications as told by people with dementia'
Year(s) Of Engagement Activity 2016
 
Description conference talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Postgraduate students
Results and Impact Psychology Postgraduate Affairs Group conference - Titled: Understanding the factors influencing delivery of the Promoting Independence in Dementia Intervention.
Year(s) Of Engagement Activity 2018
 
Description keynote address 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Asia Pacific Active Ageing Conference
Year(s) Of Engagement Activity 2018
 
Description lecture on PRIDE progress 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentation on PRIDE progress to research group
Year(s) Of Engagement Activity 2018
 
Description public lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact lecture on Cooking for Cognition based on PRIDE work
Year(s) Of Engagement Activity 2018
 
Description public seminar 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact March 2018 Public seminar University of Nottingham 'doing co research with people with dementia'
Year(s) Of Engagement Activity 2018
 
Description talk as part of a symposium 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Symposium: Considering the quality of fidelity measures: The promoting independence in dementia intervention at the European Health Psychology Society Conference
Year(s) Of Engagement Activity 2018