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Person-Centred Care for those living

with Dementia: Reflections from theory, Research

and Practice

Professor Dawn Brooker Association for Dementia Studies

University of Worcester UK

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The Association for Dementia Studies at the University of

Worcester, UK

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Theory development: Tom Kitwood Person centre approaches to

dementia care (1989-1997) Foundations in Martin Buber and

Carl Rogers The enriched model of dementia Supporting personhood Eradication of malignant social

psychology and promotion of positive person work

Kitwood, T. (1997). Dementia Reconsidered: the person comes first. Buckingham: Open University Press. Brooker, D. (Editor) and Kitwood, T. (2019). Dementia Reconsidered, Revisited: The person still comes first. London, Open University Press.

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NICE-SCIE Guideline on Dementia 2018 (and 2006)

Person-centred care

Human Value the person and their families and carers (regardless of age or cognitive impairment)

Individuality of people living with dementia and how their personality and life experience influence their response to dementia

Understands the importance of the Perspective of the person with dementia

Relationships and interactions with others (Social environment) promotes well-being.

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The Rights of People Living with Dementia

• We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it.

• We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.

• We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.

• We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.

• We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.

http://www.dementiaaction.org.uk/nationaldementiadeclaration accessed June 30th 2017

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Timeline of diagnostic opportunities

Prince, M., Bryce, R. & Ferri, C. (2011) World Alzheimer Report 2011: The Benefits of Early Diagnosis and Intervention. Alzheimer’s Disease International. Available online at http://www.alz.co.uk/research/WorldAlzheimerReport2011.pdf

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Benefits and Risks of shifting diagnosis from T4 to T3;

Brooker, D., La Fontaine, J., Evans, S., Bray, J. & Saad, K., (2014) Public health guidance ton timely diagnosis of dementia: ALzheimer’s COoperative Valuation in Europe (ALCOVE) Recommendations, International Journal of Geriatric Psychiatry , 29: 682–693

Benefit Risks

Person living with dementia

The right to know Time to adjust and plan Ability to make decisions including advanced care planning Improved quality of life Access to treatment, intervention and services

Negative attitudes towards the person diagnosed Misdiagnosis because earlier presentation more complex Hopelessness, Depression, Fear, Anxiety

Family Understanding the changes Time to adjust Opportunity to build support. Access to services

Negative attitudes towards people Changing dynamics in families can overwhelm or increase risk of “abuse” Isolation, loneliness, fear, despair

Health and social care economy

Social and fiscal benefits Support services for family carers

No services available or services are targeted at later stage. Without services to help those diagnosed the benefits to people and their families will be lost

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Post-diagnostic support is crucial

Without support to help those diagnosed, the benefits to people and their families will be lost.

• What’s the aim at this stage for people and families?

• Resilience building? What is the psychological model?

• Muddling through until you can’t cope?

• What are the practitioner and professional skills needed to provide support at this time?

• Evidence of what works for who, and how is lacking.

Adaptive implementation and

validation of the Meeting

Centers Support Program for

people with Dementia and their

carers in Europe

Dept of Psychiatry, VUmc Amsterdam, NL Alzheimer center

Coordinator: Prof.dr. Rose-Marie Dröes

Learning from the Netherlands 2014-17

www.meetingdem.eu

Meeting Centres in The Netherlands

From 2004-2018

11 150 Centres

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Typical Meeting Centre

• For people living at home. • Inclusive & friendly focus on

BOTH person with dementia and family carer

• Helping both adapt and adjust well to living with dementia underpinned by the Adaptation and Coping Model

• Social Club (3 days per week 10am -4pm) regular and on-going

• Very local, accessible, no us and them, ordinary life setting

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Typical Meeting Centre

• Supports 16-20 people per day plus family (60 supported over the year)

• Activity is determined by the needs and aspirations of the members. All contribute in some way

• Staffed by Centre Manager, Group Co-ordinator, Support Worker & Volunteers

• On-going collaboration between local stakeholders

• Outreach into the local community. • Research evidence base dating back

15 years

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Meeting-Dem Adaptive Implementation Research

• Implementation research in care innovation suggests that translating practice to other countries is much more than just translating words and ideas;

• The first phase of MEETINGDEM focused on the preparation of the adaptive implementation of the MCSP in the three countries to set up pilot Meeting centres

• The second phase evaluated their impact and cost effectiveness compared to usual care.

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First Meeting Centres in the UK, Italy & Poland

Rimini

Milano Wroclaw

Wroclaw

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Results

• Overall, Meeting Centre members saw greater improvement in Quality of Life (DQoL) than those having “usual care”

• Significant impact for Meeting Centre group at 6 months attendance on self-esteem (p=0.03), positive affect (p=0.00), feelings of belonging (p=0.01)

• Correlation between higher levels of attendance and bigger decrease in neuropsychiatric symptoms for Meeting Centre group

University of Worcester Association for Dementia Studies

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User Satisfaction: Results

• The number of people living with dementia who were very satisfied with Meeting Centres activity program increased significantly over time (p<0.05) between three months and six months.

• The large majority of caregivers (83.5%) reported that they felt less burdened after three months of participation in Meeting Centres

• After six months this number increased significantly to 91% (p<0.04)

• Focus group analysis showed that people with dementia and caregivers in all countries/centres reported an improvement in their emotional balance in line with adaptation and coping model.

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Films and information about the Meeting Centres Support Programme

https://www.meetingdem.eu/

How do Meeting Centres help people affected by dementia? – YouTube

Association for Dementia Studies University of Worcester website (Dementia Research)

https://www.facebook.com/Leominster-Meeting-Centre-649789128537121/

https://www.youtube.com/watch?v=6M34hog5re4 Rural Media Films

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UK Meeting Centres Support Programme (UK MCSP)

meetingcentres@worc.ac.uk

References • . • Brooker, D., Evans, S.C., Evans, S.B., Bray, J., Saibene, F.L., Scorolli, C., Szcześniak,, D., D’Arma, A., Urbańska, K., Atkinson, T., Farina, E.,

Rymaszewska, J., Chattat, R., Henderson, C., Rehill, A., Hendriks, I., Meiland, F. and Dröes, RM. (2018) Evaluation of the implementation of Meeting Centres Support Programme: The impact on people living with dementia in Italy, Poland and UK; exploration of the effects on people with dementia. International Journal of Geriatric Psychiatry, 33; 883-892

• Brooker, D., Evans, S.B. and Dröes, R.M. (2017) Framing outcomes of post-diagnostic psychosocial interventions in dementia. Working with Older People, 21(1), 13-21

• Dröes, R.M., et al., Effect of combined support for people with dementia and carers versus regular day care on behaviour and mood of persons with dementia: results from a multi-centre implementation study. Int J Geriatr Psychiatry, 2004. 19(7): p. 673-84.

• Droes, R.M., et al., Effect of combined support for people with dementia and carers versus regular day care on behaviour and mood of persons with dementia: results from a multi-centre implementation study. Int J Geriatr Psychiatry, 2004. 19(7): p. 673-84.

• Dröes, R.M., et al., Effect of the Meeting Centres Support Program on informal carers of people with dementia: results from a multi-centre study. Aging Ment Health, 2006. 10(2): p. 112-24.

• Dröes, R. M., Meiland, F. J. M., Evans, S., Brooker, D., Farina, E., Szcześniak, D., L. D. Van Mierlo, M. Orrell, J. Rymaszewska & Chattat, R. (2017) Comparison of the adaptive implementation and evaluation of the Meeting Centers Support Program for people with dementia and their family carers in Europe; study protocol of the MEETINGDEM project. BMC geriatrics, 17(1).

• Mangiaracina, F., Chattat, R., Farina, E., Saibene, F.L., Gamberini, G., Brooker, D., Evans, S.C., Evans, S.B., Szcześniak, D., Urbanska, K., Rymaszewska, J., Hendriks, I., Dröes, R.M., and Meiland, F.J.M. (2017) Not Re-inventing the Wheel: The Adaptive implementation of the Meeting Centres Support Programme in four European countries. Aging and Mental Health, 21(1), 40-48.

• Szcześniak, D., Dröes, R., Meiland, F., Brooker, D., Farina, E., Chattat, R., . . . Rymaszewska, J. (2018). Does the community-based combined Meeting Center Support Programme (MCSP) make the pathway to day-care activities easier for people living with dementia? A comparison before and after implementation of MCSP in three European countries. International Psychogeriatrics, 1-18. doi:10.1017/S1041610217002885

• Van Mierlo, L., Chattat, R., Evans, S., Brooker, D., Saibene, F., Gamberini, G., Farina, E., Scorolli, C., Szczesniak, D., Urbanska, K.M., Rymaszewska, J., Dröes, R.M., Meiland, F.J.M. (2018). Facilitators and barriers to adaptive implementation of the Meeting Centers Support Program (MCSP) in three European countries; the process evaluation within the MEETINGDEM study. International Psychogeriatrics, 30(4), 527-537. doi:10.1017/S1041610217001922

•

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Acknowledgements and thanks MEETINGDEM (2014-17) is led by the VU Medical Center University Amsterdam & focuses on establishing Meeting Centres in the UK, Italy and Poland and evaluating the impact of these Centres after 12-18 months of operation: FUNDERS MEETING DEM is an EU Joint Programme - Neurodegenerative Disease Research JPND http://www.jpnd.eu project number JPND_HC-559-018. The project is supported through the following funding organisations under the aegis of JPND; Italy, Ministry of Education and Ministry of Health; The Netherlands, ZonMw; Poland, NCBR; UK, ESRC Grant reference: ES/L00920X/1. PRINCIPAL & CO-INVESTIGATORS Rose-Marie Dröes, Franka Meiland, Dawn Brooker, Simon Evans, Shirley Evans, Martin Orrell, Rabih Chattat, Elisabetta Farina , Joanna Rymaszewska & Dorota Szcześniak IN THE UK University of Worcester: Dawn Brooker, Simon Evans ,Shirley Evans, Mike Watts , Teresa Atkinson , Nicola Jacobson, Nicola Bradbury & Jen Bray: LSE Cate Henderson, Amritpal Rehill, Martin Knapp; UCL Martin Orrell; Alzheimer’s Society: Colin Capper, Ruth de Sainte-Croix, Gill Read, Sam Arnold, Ginnie Jacques, Debbie Powney; Kumbi Mandinyenya, Dave Ash; Herefordshire County Council. All the members and supporters at the Droitwich Spa and Leominster Meeting Centres CIO’s. UK-MSCP (2018-21) is funded by the Big Lottery UK Portfolio grant 31061526.

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With very special thanks to…..

Professor Rose-Marie Dröes • Founder of the Meeting

Centres Support Programme & Principal Investigator on the MeetingDem Project

• Vision, inspiration and tireless committment to making the world a better place for people and families affected by dementia world-wide.

Thank you for listening

Interested in knowing more? University of Worcester Association for Dementia Studies meetingcentres@worc.ac.uk

https://www.worcester.ac.uk/discover/uk-meeting-centres-support-programme.html