Resources with an EDI focus to support people affected by dementia

This is a small selection of the resources which are available to support person-centred care for people with dementia and carers from diverse backgrounds.

Please send JDC more examples of resources you have created or found useful – email sue@dementiapublishing.community

Minority ethnic communities

ADAPT Toolkit: The toolkit includes films, animations, assessment tools & more – all culturally and linguistically adapted for South Asian communities. The toolkit is a co-production between academic researchers, carers, people living with dementia and filmmakers, providing a rich and comprehensive resource

raceequalityfoundation.org.uk/adapt/

Dr Karan Jutlla provides links on her website to many useful resources for supporting people from South Asian communities

drjutlla.com/resources/

Cuimhne Campaign – Irish in Britain:

The Cuimhne (Irish word for memory) Campaign has been running since 2012 and has raised awareness of dementia and supported the development of culturally sensitive community services for Irish people affected by dementia in the UK.

www.irishinbritain.org/what-we-do/our-campaigns/cuimhne-irish-memory-loss-alliance/cuimhne-carers-project

Dementia Alliance for Culture and Ethnicity:

An eclectic collection of resources for UK migrant communities, encompassing awareness-raising videos in English and a variety of community languages, links to other resources and research, and practical tools for supporting people affected by dementia in minority ethnic communities.

www.demace.com

Alzheimer’s Society dementia information in different languages:

www.alzheimers.org.uk/get-support/publications-factsheets/accessible-resources/information-in-your-language

LGBTQ+ communities

Alzheimer’s Society LGBTQ+ resources:

Information for LGBTQ+ people who are living with dementia and advice on how to access appropriate support

www.alzheimers.org.uk/get-support/daily-living/lgbtq-living-with-dementia

Information and advice for those who are supporting an LGBTQ+ person who is living with dementia.

www.alzheimers.org.uk/get-support/help-dementia-care/supporting-lgbtq-dementia

Skills for care LGBTQ+ Learning Framework:

A learning framework for the social care workforce to help staff develop the insights, knowledge and skills to enable them to work effectively with LGBTQ+ people in later life.

www.skillsforcare.org.uk/Support-for-leaders-and-managers/Supporting-a-diverse-workforce/LGBTQ-learning-framework.aspx

Deaf BSL community

British Deaf Association Scotland Dementia Toolkit:

Invaluable information for Deaf people living with dementia and their families and for professionals supporting them. Includes a series of videos in BSL, and a comprehensive booklet in English setting out good practice.

bda.org.uk/dementiatoolkit/

Alzheimer’s Society resources for the Deaf BSL community:

A series of videos in British Sign Language on different types of dementia and related topics.

www.alzheimers.org.uk/get-support/publications-factsheets/accessible-resources/information-in-your-language/dementia-information-bsl

Co-production

Co-production – what it is and how to do it:

Explains the principles and practice of co-production, and its benefits for people who require care and support

www.scie.org.uk/co-production/what-how

Inclusive research

Dementia Enquirers:

A wealth of resources demonstrating the benefits of including people with dementia as research partners, and providing guidance to people with dementia and professional researchers about how to co-produce research.

dementiaenquirers.org.uk/publications/

Human Rights

World Health Organization briefing on “Ensuring a human rights based approach for people living with dementia”.

www.ohchr.org/sites/default/files/Documents/Issues/OlderPersons/Dementia/ThematicBrief.pdf

Our dementia our rights:

Accessible booklet explaining the principles and practice of a human rights based approach for people living with dementia and their families.

www.dementiavoices.org.uk/wp-content/uploads/2016/11/Our-dementia-Our-rights-booklet.pdf

Books

Theory and practice

The Practical Handbook of Living with Dementia eds. Isla Parker, Richard Coaten and Mark Hopfenbeck, PCCS Books 2022

A wide-ranging handbook for practitioners exploring many aspects of dementia care. Includes chapters on the experience of people living with dementia from diverse communities and practical guidance for providing support and inclusion.

The Dementia Manifesto: Putting Values-Based Practice to Work. Julian C Hughes, Toby Williamson.

Cambridge University Press 2019

Explores how a values-based, person-centred and rights-based approach can be applied to every aspect of the experience of dementia, including diagnosis, treatment, care, social attitudes, research, public policy and funding.

Supporting People Living with Dementia in Black, Asian and Minority Ethnic Communities: Key Issues and Strategies for Change. Ed. David Truswell.

Jessica Kingsley Publishers 2020

Explores the experience of dementia in various minority ethnic communities in the UK, highlighting the additional barriers faced by members of these communities, and sharing examples of successful initiatives to overcome these challenges.

LGBTQ+ People and Dementia: A Good Practice Guide Sue Westwood and Elizabeth Price

Jessica Kingsley Publishers 2023

Brings together research, policy and the voices of LGBTQ+ people with dementia, highlighting the importance of a person-centred approach – moving away from the idea of equality as treating everyone the same, towards treating everyone as individuals.

Lived experience

People with dementia speak out Ed. Lucy Whitman. Jessica Kingsley Publishers 2016

Personal accounts by people living with dementia.
“It brings alive the experience of living with dementia through the stories of people from all walks of life in the UK, and eloquently illustrates … that dementia does not discriminate.”

Telling tales about dementia: the experience of caring Ed. Lucy Whitman. Jessica Kingsley Publishers 2010

Personal accounts by family carers from diverse backgrounds. “Vivid personalities shine through, reminding us that every person with dementia, every carer and every caring relationship is different and individual, therefore services need to be sensitive, personal and flexible.”

EVIDENCE FOR PRACTICE/RESEARCH NEWS

 LGBT Caregivers

This review concluded that there is limited cultural competency in services, and a subsequent reluctance by caregivers to seek help impacts on the use of support services among LGBT caregivers. Implications for practice include the development of cost-effective, feasible, and acceptable inclusiveness training. Implications for policy include implementation in organisations of top-down agendas supporting staff to understand sexuality and non-heteronormative relationships in older age.

Di Lorito C, Bosco A, Peel E et al (2022) Are dementia services and support organisations meeting the needs of Lesbian, Gay, Bisexual and Transgender (LGBT) caregivers of LGBT people living with dementia? A scoping review of the literature. Aging & Mental Health. Published May 30 2022.  https://doi:10.1080/13607863.2021.2008870  Open access.

Data, ethnicity and dementia 

Using linked data, this UK study found that Black and South Asian people are diagnosed with dementia at a younger age and die at a younger age with dementia than White people. This identifies a priority for reduction of inequities, and for targeted prevention and care strategies to facilitate take-up.

Mukadam M, Marston L, Lewis G et al. Incidence, age at diagnosis and survival with dementia across ethnic groups in England: A longitudinal study using electronic health records. Alzheimer’s and Dementia. Publ. September 1 2022. doi.org/10.1002/alz.12774  (Open access)

Deaf people with dementia in care homes

This research project aimed to find out how to improve care for Deaf residents with dementia in care homes, from the point of view of Deaf people and that of care home providers.
All data were collected by Deaf researchers in BSL through interviews and focus groups. It was found that perspectives of Deaf people and care home perspectives are quite different, although identifying some of the same challenges and opportunities to learn from each other. The report includes recommendations for improving care practice.

British Deaf Association, Life Changes Trust, SORD (Social Research with Deaf People) and University of Manchester. Deaf People with Dementia and Care Homes in Scotland. Published March 2022.  bda.org.uk/dementiaresearch/   Open access

Person-centred practice support tool

Using surveys and focus groups in UK, Norway and Spain, this evaluation indicated that the Person-Centred Observation and Reflection Tool (PORT) is accessible, easy and acceptable for use in health and social care settings to support older people with dementia.

Surr C, Rokstad AMM, Miravent JV et al. Development and acceptability of the person-centred observation and reflection tool for supporting staff and practice development in dementia care services.  International Journal of Older People Nursing. Published June 18 2023. doi.org/10.1111/opn.12555. Open access

Radiographer perceptions of person-centred care

Using focus groups around the UK, this qualitative study explored the perceptions and compatibility of current professional guidance by both diagnostic imaging and radiotherapeutic radiography practitioners as well as the key stakeholders involved with developing the Society and College of Radiographers clinical practice guidelines for caring for people with dementia. It concluded that many radiography practitioners still feel unprepared when caring for people living with dementia despite the clinical practice guidelines. The findings suggest a need for profession specific education for radiography practitioners to support the provision of person-centred dementia care and a need for dementia friendly environmental design in diagnostic imaging and radiotherapy departments.

Higgins R, Spacey A, Innes A. Delivering person-centred dementia care: Perceptions of radiography practitioners within diagnostic imaging and radiotherapy departments. Dementia. Published July 14 2023. doi.org/10.1177/14713012231189061 Open access.

Physical restrictions in care plan meetings

This study used conversational analysis to examine 15 care plan meetings in long-term dementia care settings to identify the professional practices of discussing the physical restrictions posed to residents with severe dementia. It recommends involving family members in decision-making about restraining at an earlier stage, adjusting the protocol in care plan meetings, and engaging the family in minimizing and preventing restraints. In general, staff members should pay more attention to the residents’ experiences and the family members’ lifeworld knowledge of the residents.

Paananen J, Lindholm C. Discussing physical restrictions in care plan meetings between family members of residents with dementia and nursing home staff.  Dementia. Published June 30 2023.  doi.org/10.1177/14713012231186346 Open access.

Structural capabilities in primary care

In primary care settings where nurse practitioners deliver care, this study compared practices with high and low volumes of people living with dementia. The authors concluded that many do not have the essential infrastructure for providing optimal dementia care and suggest Practice Managers should focus on implementing the essential structural capabilities to address the complex needs of people living with dementia.

Hovsepian VE, Liu J, Schlak AE et al. Structural capabilities in primary care practices where nurse practitioners care for persons living with dementia. International Journal of Older People Nursing. Published July 11 2023. doi.org/10.1111/opn.12556.  Restricted access.

Caregiver intervention to improve pain assessment

Family caregivers of persons with comorbid pain and moderate-to-advanced dementia were randomly assigned to the Pain Identification and Communication Toolkit (PICT) or a control group. PICT caregivers reported that the intervention helped them to feel more confident in their ability to recognize and communicate about pain symptoms. At 12-weeks, caregivers in the PICT group showed a statistically significant improvement in self-efficacy in pain-related communication. In qualitative interviews, caregivers emphasized the utility of PICT’s components, including pain assessment tools, and offered considerations for future enhancements, such as technology-based adaptations and integration within care delivery systems. Overall, the trial demonstrates that PICT is feasible to implement, acceptable to caregivers, and has the potential to improve confidence in recognizing and communicating about pain.

Riffin C, Brody L, Mukhi P et al. Establishing the feasibility and acceptability of a caregiver targeted intervention to improve pain assessment among persons with dementia.  Innovation in Aging. Igad074. Published July 2023. doi.org/10.1093/geroni/igad074. Open access but available only as a pdf.

Self-guided interventions in carers

This systematic literature review examined the effects of self-guided interventions on stress, burden, and mental health of unpaid caregivers of people living with dementia. Stress was generally reduced after the interventions. However, the results of burden and mental health from each intervention were mixed and inconsistent. Interestingly, interventions that lasted less than three months were more likely to have better efficacy. Although the results of self-guided interventions are mixed, this is a potentially useful tool in improving emotional well-being for unpaid caregivers of people living with dementia due to low time burden, ease-to-access, and affordability. Future direction in intervention development should include identifying the optimal length and components of self-guided interventions and collaboration with clinicians for wider distribution to unpaid caregivers of people living with dementia.

Ko E. Wongvibul T, Rose KM, Jun J. The effects of self-guided interventions on stress, burden and mental health in caregivers of people living with dementia: A systematic review. International Journal of Nursing Studies Advances. Published July 13 2023.  doi.org/10.1016/j.ijnsa.2023.100141. Open access.

Exercise

This randomised controlled pilot study examined the feasibility of delivering a Seniors Exercise Park Programme to people living with dementia in residential aged care in Australia. It also evaluated the programme’s structure, safety, and supervision needs along with the physical, social, health and cognitive benefits of participation. The programme was found to be safe and feasible for people living with dementia in residential care, with high levels of enjoyment, positive attitude, and engagement reported in the intervention group. Individualised communication during program delivery was needed to facilitate motivation and participation.

Levinger P, Goh AMY, Dunn J et al. Exercise interveNtion outdoor proJect in the cOmmunitY – results from the ENJOY program for independence in dementia: a feasibility pilot randomised controlled trial. BMC Geriatrics, 23, 426.Published July 12 2023. doi.org/10.1186/s12877-023-04132-5. Open access.

The adoption of apps

This study explores the barriers and facilitators to app acceptance and adoption, including the importance of “feel good moments” and positive experiences, challenges associated with living with dementia, the importance of ongoing support, and security of the user’s information. It captures the views and experiences of people living with dementia in relation to the factors influencing the adoption of apps.

Conway A, Ryan A, Harkin D, McCauley CM. “It’s another feather in my hat” – Exploring factors influencing the adoption of Apps with people living with dementia.  Dementia. Published June 26 2023. doi.org/10.1177/147130122311852833.  Open access.

Young-onset dementia and euthanasia

This Belgian study aimed to explore the considerations that people with young-onset dementia and their family caregivers expressed on euthanasia. The topic arose at ‘key’ moments, mostly with family caregivers, and was motivated by patients considering the impact of disease progression for themselves and their loved-ones. Caregivers shared opinions on the euthanasia law and discussed the emotional impact of discussing euthanasia. Considerations of people with young-onset dementia towards euthanasia appear rooted in personal, as well as in anticipated interpersonal and societal suffering. The negative image associated with dementia and dementia care seemed to influence people’s expectations for and thoughts on the future. The authors recommend that patient-physician communication should include detangling motives for euthanasia requests, openly discussing fears and reflecting on prognosis.

Rickstal RV, De Vieminck A, Chambaere K, Van den Block L. People with young-onset dementia and their family caregivers discussing euthanasia: a qualitative analysis of their considerations. Patient Education and Counseling. Published July 12 2023. doi.org/10.1016/j.pec.2023.107882

Support priorities of older carers

Through nominal group technique focus groups, this study sought to understand the support priorities of older (65+ years old) carers of people living with dementia. Overarching themes consisted of prioritising the carers’ holistic needs; having a sense of belonging; support needs to be accessible and timely; support to meet the wellbeing and personhood of the person living with dementia; and understanding and training for the wider community. The identified priorities can be used by services and organisations to enhance the support and services that older carers receive.

Herron D, Runacres J. The support priorities of older carers of people living with dementia: A nominal group technique study. Healthcare. 11(14) 1998. Published July 11 2023. doi.org/10.3390/healthcare11141998. Open access.

Spousal grief in cognitive decline
Pre-death grief in the context of dementia caregiving is a significant risk factor for depression, burden, anxiety, and adjustment difficulties. The Two-Track Model of Dementia Grief (TTM-DG) provides a bifocal perspective addressing the nature of the emotional attachment to a loved one living with cognitive impairment, along with a medico-psychiatric perspective associated with stress, trauma, and change in life. Evaluating the model, this study provides empirical support for the utility of the TTM-DG in the identification of risk factors associated with maladaptive responses and pre-death grief following a spousal cognitive decline. It concludes that the TTM-DG can assist in the formulation of evidence-based evaluations and interventions to assist spouses caring for their loved ones living with dementia.

Manevich A, Rubin SS, Katz M et al. Risk, Resilience, and the Two-Track Model of Dementia Grief Among Spouses of People Living With Cognitive Decline. Gerontology and Geriatric Medicine. 2023;9. Published June 17 2023.  doi:10.1177/23337214231171264. Open access.

Palliative care support

Evidence from clinical trials supports the ability of palliative care to improve patient and caregiver outcomes by the use of outpatient or home-based palliative care interventions for people with motor neuron disease, multiple sclerosis, or Parkinson’s disease; inpatient palliative care consultations for people with advanced dementia; telephone-based case management for people with dementia in the community; and nurse-led discussions with decision aids for people with advanced dementia in long-term care. This paper highlights that, unfortunately, most people with neurological diseases do not get the support that they need for their palliative care under current standards of healthcare. Improving this situation requires the deployment of routine screening to identify individual palliative care needs, the integration of palliative care approaches into routine neurological care, and collaboration between neurologists and palliative care specialists. Research, education, and advocacy are also needed to raise standards of care.

Kluger BM, Hudson P, Hanson L et al. Palliative care to support the needs of adults with neurological disease. The Lancet Neurology. 22(7) 619-631. Published July 2023. doi.org/10.1016/S1474-4422(23)00129-1. Restricted access.

Young Dementia
A collection of research focusing on the most prominent subjects relating to young onset dementia, gathered by members of the Young Dementia Network steering group and other experienced researchers is at:
www.youngdementianetwork.org/research-evidence/