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Innovations in Care and Support for People Living with Young Onset or Rarer Forms of Dementia

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A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Health Care Sciences".

Deadline for manuscript submissions: closed (1 May 2024) | Viewed by 25003

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Special Issue Editors

Prof. Dr. Paul M. Camic

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Guest Editor

Dementia Research Centre, UCL Institute of Neurology, University College London, London WC1N 3AR, UK
Interests: public health; dementia care; arts and health; clinical health psychology

Prof. Dr. Mary Pat Sullivan

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Guest Editor

School of Social Work, Faculty of Education and Professional Studies, Nipissing University, North Bay, ON P1B 8L7, Canada
Interests: geriatric mental health; dementia care; social isolation and loneliness; elder abuse; aging without children

Special Issue Information

Dear Colleagues,

We acknowledge that obtaining an accurate diagnosis for people living with a young onset or rarer form of dementia continues to be challenging for many. Rarer forms of dementia are characterized by cognitive symptoms other than memory decline, and age of onset often before the age of 65. Frequently overlooked in current research is specialist care and support for this population.

This Special Issue invites contributions from researchers who are developing and evaluating new approaches for people living with dementia, for care partners or families. Of particular interest are projects that are co-produced by or have had the direct involvement of people living with dementia; that occur in smaller urban and rural areas; and that involve cultural, linguistic, gender, or sexual diversities. We are open to a range of different methodologies, including arts-based approaches; also of interest are systemic, integrative, and scoping literature reviews. All contributions should address health promotion within the topic area of the submission.

For consideration, please submit manuscript proposals (up to 500 words) to Special Issue editors, Prof. Dr. Paul M. Camic ([email protected]) and Prof. Dr. Mary Pat Sullivan ([email protected]). For those accepted for consideration, paper submission will be due on 1st May 2024 for preliminary review.

Prof. Dr. Paul M. Camic
Prof. Dr. Mary Pat Sullivan
Guest Editors

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Keywords

health promotion
dementia
young onset dementia
rarer dementias
creative approaches
arts and health
social exclusion
public health
dementia friendly communities

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Published Papers (11 papers)

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Research

41 pages, 13053 KiB

Open AccessArticle

The Design of Health Promoting Outdoor Environments for People with Young-Onset Dementia—A Study from a Rehabilitation Garden

by Nina Oher, Jonna Tingberg and Anna Bengtsson

Int. J. Environ. Res. Public Health 2024, 21(8), 1047; https://doi.org/10.3390/ijerph21081047 - 9 Aug 2024

Viewed by 1454

Abstract

Health-promoting outdoor environments designed for people living with dementia (PLwD) has proved to be an effective non-pharmacological intervention for treatment of symptoms and improved well-being. However, for individuals with Young-Onset Dementia (YOD), who have particular symptoms and needs, the content and design of these environments are underexplored. This study aimed to explore the needs of individuals with YOD in a garden setting, to generate design-related knowledge for ‘dementia-friendly’ outdoor environments, while contributing to the field of Evidence-Based Design (EBD). An 8-week long nature-based program was carried out in Alnarp’s rehabilitation garden, a specifically developed garden based on research from e.g., landscape architecture, environmental psychology and medical science. The study used a triangulation of qualitative methods including six participants with YOD and a multidisciplinary team of five staff members. Content analysis was used for all gathered data, including 17 semi-structured interviews with participants with YOD and with staff. Data collection and analysis was performed based on the evidence-based Quality Evaluation Tool (QET). The study led to a target group adapted version of the QET for people with YOD containing 20 developed environmental qualities for designers to pursue in therapeutic gardens, including the additional quality of Calmness. A progression was noted, as a result of perceived positive effects during the intervention, indicating possible change and development of the group’s needs and preferences in the outdoors. Full article

(This article belongs to the Special Issue Innovations in Care and Support for People Living with Young Onset or Rarer Forms of Dementia)

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18 pages, 1561 KiB

Open AccessArticle

Creating and Reliving the Moment: Using Musical Improvisation and Care Aesthetics as a Lens of Connection and Self-Expression for Younger People Living with Dementia

by Robyn Dowlen, Dougal Henry James McPherson, Caroline Swarbrick, Lizzie Hoskin, James Thompson and John Keady

Int. J. Environ. Res. Public Health 2024, 21(8), 972; https://doi.org/10.3390/ijerph21080972 - 25 Jul 2024

Viewed by 1142

Abstract

Musical improvisation is a generative process of spontaneously creating music ‘in the moment’. For people with young onset dementia, musical improvisation provides an extended opportunity for creative self-expression and connection to one’s own body and life story. Using visual research methods, including video elicitation interviews, this paper explores the ‘in the moment’ musical experiences of five people living with young onset dementia who took part in a 15-week improvised music-making programme (Music in Mind). We frame the exploration of the group’s musical experiences through the emerging lens of ‘care aesthetics’—a concept that identifies the sensory relations and embodied practices between two (or more) people in a caring relationship. In the context of this analysis, we look to the caring practices by, with, and between people living with dementia, their family members, and the musicians who lead the programme and the relationship of these practices to feelings of self-expression and meaningful connection. Musical improvisation has the potential to support the psychological, social, and spiritual wellbeing of people living with young onset dementia. In applying a lens of care aesthetics, it is possible to observe the micro-level experiences of people living with dementia and their family carers. Full article

(This article belongs to the Special Issue Innovations in Care and Support for People Living with Young Onset or Rarer Forms of Dementia)

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17 pages, 409 KiB

Open AccessArticle

Rehabilitation Services for Young-Onset Dementia: Examples from High- and Low–Middle-Income Countries

by Aida Suárez-González, Sharon A Savage, Suvarna Alladi, Viviane Amaral-Carvalho, Faheem Arshad, Julieta Camino, Paulo Caramelli, Adelina Comas-Herrera, Julia Cook, Claudia Cooper, Laura García Díaz, Stephanie M. Grasso, Regina Jokel, Monica Lavoie, Tomás León, Thomas Priya, Teresita Ramos Franco, Cathleen Taylor-Rubin, Rosemary Townsend, Angelika Thöne-Otto, Andrea Slachevsky, Anna Volkmer, Wendy Weidner and Claire MC O’Connor Show full author list Hide full author list

Int. J. Environ. Res. Public Health 2024, 21(6), 790; https://doi.org/10.3390/ijerph21060790 - 17 Jun 2024

Viewed by 2543

Abstract

The WHO Dementia Global Action Plan states that rehabilitation services for dementia are required to promote health, reduce disability, and maintain quality of life for those living with dementia. Current services, however, are scarce, particularly for people with young-onset dementia (YOD). This article, written by an international group of multidisciplinary dementia specialists, offers a three-part overview to promote the development of rehabilitation services for YOD. Firstly, we provide a synthesis of knowledge on current evidence-based rehabilitative therapies for early-onset Alzheimer’s disease (EOAD), behavioural variant frontotemporal dementia (bvFTD), primary progressive aphasia (PPA), and posterior cortical atrophy (PCA). Secondly, we discuss the characteristics of rehabilitation services for YOD, providing examples across three continents for how these services can be embedded in existing settings and the different roles of the rehabilitation multidisciplinary team. Lastly, we conclude by highlighting the potential of telehealth in making rehabilitation services more accessible for people with YOD. Overall, with this paper, we aim to encourage clinical leads to begin introducing at least some rehabilitation into their services, leveraging existing resources and finding support in the collective expertise of the broader multidisciplinary dementia professional community. Full article

(This article belongs to the Special Issue Innovations in Care and Support for People Living with Young Onset or Rarer Forms of Dementia)

22 pages, 1122 KiB

Open AccessArticle

“It’s a Postcode Lottery”: How Do People Affected by Dementia in Wales Experience Their Diagnosis and Post-Diagnostic Support, and How May These Be Improved?

by Jennifer Rhiannon Roberts, Gill Windle, Catherine Anne MacLeod, Mary Pat Sullivan, Paul M. Camic, Joshua Stott, Emilie Brotherhood, Kiara Jackson and Sebastian Crutch

Int. J. Environ. Res. Public Health 2024, 21(6), 709; https://doi.org/10.3390/ijerph21060709 - 30 May 2024

Viewed by 1221

Abstract

National dementia strategies are government policies that guide the provision of appropriate support for people living with dementia. These strategies, developed through extensive stakeholder engagement, should be tailored to the cultural and demographic needs of a country. Using a mixed methods survey design, this study explored the aims of the Dementia Action Plan (2018–2022) for Wales (UK) around assessment, diagnosis, and post-diagnostic support, and assessed whether these are being realized. Further, it sought to gain insight from people living with dementia and their carers around how the experience may be improved for others in the future, as the development of the next iteration of the Action Plan is anticipated. Respondents included 71 people, affected by typical and rarer types of dementia, living in both rural and urban areas. Findings suggest both positive and negative experiences, reflecting a ‘postcode lottery’ of service provision. Attainable recommendations for improvement were made by respondents, which would ultimately likely be cost-effective and reduce strain on formal services. The findings reported in this paper concur with those reported by people living with dementia in other countries, indicating their relevance for policymakers beyond Wales. Full article

(This article belongs to the Special Issue Innovations in Care and Support for People Living with Young Onset or Rarer Forms of Dementia)

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10 pages, 282 KiB

Open AccessArticle

Peer Support for Caregivers of People Living with Posterior Cortical Atrophy in Melbourne, Australia: A Feasibility Study

by Alexander Mitchell, Wendy Kelso, Camille Paynter, Leanne Hayes, Dennis Velakoulis and Samantha M. Loi

Int. J. Environ. Res. Public Health 2024, 21(4), 513; https://doi.org/10.3390/ijerph21040513 - 22 Apr 2024

Cited by 1 | Viewed by 1509

Abstract

Posterior Cortical Atrophy (PCA) is a rare form of young-onset dementia that causes early visuospatial and visuoperceptual deficits. The symptom profile of Posterior Cortical Atrophy leads to very specific care needs for those affected, who often rely on informal caregivers (including friends and family). Rare dementia support groups can be useful for both patients and their caregivers to assist with knowledge sharing, psychoeducation, and the provision of psychosocial support. Despite this, few such support groups exist. The purpose of this study was to examine a PCA support group for caregivers of individuals living with PCA. We held a structured psychoeducation support group comprised of four sessions with the aim being to provide education, strategies for the management of the disease, and peer support. Caregivers’ mental health and quality of life were assessed. The results of our study showed that support group participation was a positive experience and assisted with increasing the knowledge of caregivers and fostering social connections. We suggest that peer support groups may be beneficial for both people living with PCA and their caregivers. We recommend that future quantitative and qualitative research is conducted to further assess health-promotion benefits to people living with PCA and their caregivers, and to assess their development and implementation in different contexts. Full article

(This article belongs to the Special Issue Innovations in Care and Support for People Living with Young Onset or Rarer Forms of Dementia)

16 pages, 1154 KiB

Open AccessArticle

Is the Invisibility of Dementia a Super-Power or a Curse? A Reflection on the SUNshiners’ Questionnaire into the Public Understanding of Dementia as an Invisible Disability: A User-Led Research Project

by Danielle Tingley, Rosalie Ashworth, Dalia Torres Sanchez, Grace Hayes Mac Mahon, Yvette Kusel, Brigitta Maria Rae, Tracey Shorthouse, Alan Bartley, Gabrielle Howell and Joanne Hurley

Int. J. Environ. Res. Public Health 2024, 21(4), 466; https://doi.org/10.3390/ijerph21040466 - 10 Apr 2024

Cited by 1 | Viewed by 2175

Abstract

The SUNshiners group includes people in the early stages of dementia with an interest in dementia activism and research. The group found that despite the growing awareness of invisible disabilities, there is very limited research into the pros and cons of the invisibility of dementia. Our paper explores the SUNshiners research which stemmed from varied individual experiences of disclosing diagnoses. The group designed and developed a short survey to explore what the public knew about dementia and what they thought about the invisibility of dementia. A mixture of open- and closed-ended questions were used to gain meaningful data. A total of 347 people completed the survey (315 online and 32 paper-based), which was then co-analysed. The findings suggest that the majority of the public felt that the invisibility of dementia was negative; that knowing someone had dementia when first meeting them would be beneficial; that people living with dementia should maintain the right to vote; and that people living with dementia do not automatically require a consistent, regular carer. Common themes from the open-ended answers included capacity, severity of dementia, and access to support. The findings support the disclosure of dementia diagnosis; however, more action is needed to tackle stigmatised views, particularly as the SUNshiners felt that people do not have enough dementia education to support a positive disclosure experience. They shared their experiences of the group and the project’s benefits, but also the losses they have faced. Our paper aims to be as accessible as possible. Full article

(This article belongs to the Special Issue Innovations in Care and Support for People Living with Young Onset or Rarer Forms of Dementia)

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28 pages, 369 KiB

Open AccessArticle

The Diagnostic Pathway Experiences of People Living with Rare Dementia and Their Family Caregivers: A Cross-Sectional Mixed Methods Study Using Qualitative and Economic Analyses

by Ian Davies-Abbott, Bethany F. Anthony, Kiara Jackson, Gill Windle and Rhiannon Tudor Edwards

Int. J. Environ. Res. Public Health 2024, 21(2), 231; https://doi.org/10.3390/ijerph21020231 - 16 Feb 2024

Cited by 2 | Viewed by 2536

Abstract

The pathways for receiving a diagnosis of a rare type of dementia are poorly understood. Diagnostic challenges decrease access to relevant health promotion activities and post-diagnostic support. This study was focused on pathways experienced by people affected by rare dementia in Wales, United Kingdom (UK), considering the practical, emotional, and economic consequences. Semi-structured interviews were completed with 10 people affected by rare dementia across Wales, UK (nine family caregivers and one person living with rare dementia). The interview data were subject to a thematic analysis and a bottom-up costing approach was used to cost the pathway journeys. Five transitional points occurred across the diagnostic pathway (initial contact, initial referral, further referrals—provider, further referrals—private, and diagnosis) alongside two further themes (i.e., involved in the diagnostic process and disputes between stakeholders). The timeliness of the diagnosis was perceived to often be subject to ‘luck’, with access to private healthcare a personal finance option to expedite the process. Higher economic costs were observed when, in retrospect, inappropriate referrals were made, or multiple referrals were required. The confusion and disputes relating to individual diagnostic pathways led to further emotional burdens, suggesting that higher economic costs and emotional consequences are interlinked. Clearer diagnostic pathways for rare dementia may prevent unnecessary service contacts, waiting times, and associated distress. Prioritising appropriate and timely service contacts leads to diagnosis and support to families and enables people to increase control over their health. Appropriate diagnostic pathways may be less costly and reduce costs for families. Full article

(This article belongs to the Special Issue Innovations in Care and Support for People Living with Young Onset or Rarer Forms of Dementia)

13 pages, 312 KiB

Open AccessArticle

Optimising Online Peer Support for People with Young Onset Dementia

by Esther Vera Gerritzen, Martin Orrell and Orii McDermott

Int. J. Environ. Res. Public Health 2024, 21(1), 60; https://doi.org/10.3390/ijerph21010060 - 2 Jan 2024

Cited by 4 | Viewed by 2034

Abstract

People with Young Onset Dementia (YOD) can be hesitant to engage with online peer support. This work aims to explore (1) why people are hesitant to engage in online peer support, (2) how to get more people involved in online peer support, and (3) what makes online peer support work well. Nine interviews with people with YOD were conducted on MS Teams. Participants were recruited through purposive sampling. Data were analysed thematically. Reasons for being hesitant to engage with online peer support include being unsure what to expect and concerns about seeing others in more advanced stages of dementia. Additionally, it can be difficult to identify groups that suit one’s needs and interests. Group facilitators of online peer support groups should provide a detailed description of their group so that people can better assess whether the group would suit them. The insights obtained from this study will be used to develop a Best Practice Guidance on online peer support for people with YOD. Moreover, the findings can be useful for further research exploring how to support people with dementia in general in accessing online health and social care services. Full article

(This article belongs to the Special Issue Innovations in Care and Support for People Living with Young Onset or Rarer Forms of Dementia)

19 pages, 2812 KiB

Open AccessArticle

Adaptation of an eHealth Intervention: iSupport for Carers of People with Rare Dementias

by Bethan Naunton Morgan, Gill Windle, Carolien Lamers, Emilie Brotherhood and Sebastian Crutch

Int. J. Environ. Res. Public Health 2024, 21(1), 47; https://doi.org/10.3390/ijerph21010047 - 28 Dec 2023

Cited by 1 | Viewed by 2460

Abstract

‘iSupport’ is an online psychoeducation and skills development intervention created by the World Health Organisation to support people with dementia. This project adapted iSupport for carers of people with rare dementias (iSupport RDC), creating a new resource to support the health and wellbeing of this underserved population. The adaptation involved three phases: (1) Co-design methods to generate preliminary adaptations; (2) Analysis of phase one findings informing adaptations to iSupport to develop; iSupport RDC; (3) Post-adaptation survey to ascertain participant agreement with the adaptations in iSupport RDC. Fourteen participants contributed, resulting in 212 suggested adaptations, of which 94 (92%) were considered practical, generalisable, and aligned with iSupport principles. These adaptations encompassed content and design changes, including addressing the challenges of rare dementias (PCA, PPA, LBD, and FTD). iSupport RDC represents a significant adaptation of the WHO iSupport intervention. Its tailored nature acknowledges the unique needs of people caring for someone with a rare dementia, improving their access to specialised resources and support. By extending iSupport to this population, it contributes to advancing dementia care inclusivity and broadening the understanding of rare dementias. A feasibility study is underway to assess iSupport RDCs acceptability, with prospects for cultural adaptations to benefit carers globally. Full article

(This article belongs to the Special Issue Innovations in Care and Support for People Living with Young Onset or Rarer Forms of Dementia)

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15 pages, 349 KiB

Open AccessArticle

Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers

by Patricia Masterson-Algar, Kieren Egan, Greg Flynn, Gwenllian Hughes, Aimee Spector, Joshua Stott and Gill Windle

Int. J. Environ. Res. Public Health 2023, 20(23), 7103; https://doi.org/10.3390/ijerph20237103 - 23 Nov 2023

Viewed by 2652

Abstract

Young dementia carers (YDCs) rarely receive appropriate training and support. Their visibility and identification remain dangerously low, and, consequently, support initiatives being developed are failing to reach them. This study explored the success (or failure) of YDC identification pathways as well as the barriers and enablers to their implementation. An explorative qualitative approach was followed, drawing on the experiences of parents of YDCs, dementia researchers, professionals in the field of dementia/young carers, and young adult carers. Data collection involved semi-structured interviews (n = 17) and a participatory 2-h workshop to discuss and critique preliminary themes as well as explore strategies to increase the visibility and identification of YDCs. Five themes were identified: a “whole-family approach” (as a pathway to identification), “not a carer” (self/family identification), a postcode lottery (high variability of support services), tailored support that is “fit for purpose”, and the “power” of peer support. Recommendations on potential initiatives and actions that can help raise awareness and increase the identification success of YDCs are proposed. Our findings support the need for a broad and holistic approach to the identification of YDCs that runs alongside the development of support initiatives that are accessible and relatable. The support itself will play a role in improving subsequent identification or hindering it if not “fit for purpose”. Full article

(This article belongs to the Special Issue Innovations in Care and Support for People Living with Young Onset or Rarer Forms of Dementia)

12 pages, 703 KiB

Open AccessArticle

Knowledge Is Power: Utilizing Human-Centered Design Principles with People Living with Dementia to Co-Design a Resource and Share Knowledge with Peers

by Jennifer Rhiannon Roberts, Catrin Hedd Jones, Gill Windle and the Caban Group

Int. J. Environ. Res. Public Health 2023, 20(20), 6937; https://doi.org/10.3390/ijerph20206937 - 18 Oct 2023

Cited by 1 | Viewed by 3461

Abstract

This paper describes the process used by a group of people living with young-onset dementia to inform the development and delivery of a post-diagnosis peer guide. It draws on the four stages of human-centered design and applies them in a new context of supporting resilience for people following a diagnosis of dementia. (1) Discover: The group discussed in-depth their perspectives on what it takes to be resilient while living with dementia and how this can be maintained. (2) Define: The group decided to collate practical information and knowledge based on their personal experiences into a booklet to support the resilience of others following a diagnosis of dementia. (3) Develop: The booklet was designed and developed together with input from other people living with dementia, facilitated by the authors. (4) Deliver: The group guided the professional production of the booklet ‘Knowledge is Power’. Over 8000 copies have been distributed to memory clinics, post-diagnostic support organizations and people living with dementia across Wales. A bilingual English–Scottish Gaelic adaptation and an adaptation for people in England have since been developed. The success of ‘Knowledge is Power’ highlights the importance of working alongside people with dementia to share knowledge and support their resilience. Full article

(This article belongs to the Special Issue Innovations in Care and Support for People Living with Young Onset or Rarer Forms of Dementia)

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