Experiences of people with intellectual disability and dementia: A systematic review.

BACKGROUND: Dementia disproportionately affects people with intellectual disability. Most qualitative studies explore their experiences by utilising proxy-reports. A smaller number of studies illustrate the possibility of exploring perspectives directly from people with intellectual disability and dementia. METHOD: This systematic review synthesised findings from existing studies (n = 8) that involve people with intellectual disability and dementia as participants to understand their experiences of dementia. Searches were conducted using CINAHL, PsychInfo and Social Services Abstracts. RESULTS: Findings include descriptions of changes in individual functioning, a narrowing of social worlds and of how people made sense of the changes despite often having no knowledge of their dementia diagnosis. Additionally, discussion focuses on how people's experiences are shaped by their environments. CONCLUSION: The review recognises the complexities of speaking to people with intellectual disability about dementia, challenges views that people with intellectual and dementia cannot be involved in research and makes recommendations to support inclusion in future studies.

A person-centred approach to implementation of psychosocial interventions with people who have an intellectual disability and dementia-A participatory action study.

BACKGROUND: Numbers of people with an intellectual disability and dementia present a global health and social challenge with associated need to reduce stress or agitation and improve quality of life in affected individuals. This study aimed to identify effectiveness of psychosocial interventions in social care settings and, uniquely, explore use of photovoice methodology to develop dialogue about dementia. METHODS: This mixed-method participatory action study used individualised goal-setting theory with 16 participants with intellectual disability and dementia, and 22 social care staff across 11 sites. Five co-researchers with intellectual disability were part of an inclusive research team collecting data using existing and bespoke tools including photovoice. Analysis used descriptive and inferential statistics and framework analysis. RESULTS: Seventy four percentage of individual goals met or exceeded expectations with reduction in some "as required" medication. Qualitative findings include themes of enabling care and interventions as tools for practice. Photovoice provided insight into previously unreported fears about dementia. CONCLUSIONS: Individualized psychosocial interventions have potential to reduce distress or agitation.

Revisiting Photovoice: Perceptions of Dementia Among Researchers With Intellectual Disability.

There is limited global evidence exploring perceptions of dementia among people with intellectual disabilities. This article presents findings from the first known study where an inclusive research team, including members with intellectual disability, used photovoice methodology to visually represent views of people with intellectual disabilities and dementia. Drawing on Freire's empowerment pedagogy, the study aims were consistent with global photovoice aims: enabling people to visually record critical dialogue about dementia through photography and social change. We investigated the benefits and challenges of photovoice methodology with this population and sought to identify perspectives of dementia from people with intellectual disabilities. Data collected identified issues such as peers "disappearing" and the importance of maintaining friendship as dementia progressed. Although reaching policymakers is a key aim of photovoice, this may not always be achievable, suggesting that revisiting Freire's original methodological aims may lead to improved outcomes in co-produced research with marginalized groups.

Consensus statement of the International Summit on Intellectual Disability and Dementia on valuing the perspectives of persons with intellectual disability.

The International Summit on Intellectual Disability and Dementia covered a range of issues related to dementia and intellectual disability, including the dearth of personal reflections of persons with intellectual disability affected by dementia. This article reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from the Summit attendees and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Systemic recommendations included reinforcing the value of the involvement of persons with intellectual disability in (a) research alongside removing barriers to inclusion posed by institutional/ethics review boards, (b) planning groups that establish supports for dementia and (c) peer support. Practice recommendations included (a) valuing personal perspectives in decision-making, (b) enabling peer-to-peer support models, (c) supporting choice in community-dwelling arrangements and (d) broadening availability of materials for persons with intellectual disability that would promote understanding of dementia.

Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support.

OBJECTIVES: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death. METHOD: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services. RESULTS: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person's needs as dementia progresses. CONCLUSIONS: Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia.

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the "diagnostic phase," (2) the "explorative phase," (3) the "adaptive phase," and (4) the "closure phase." The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.

Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia.

BACKGROUND: Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. METHODS: A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup. RESULTS: The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end of life care and supports, and involvement of adults with intellectual disability early on in their advance care planning. CONCLUSIONS: The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.

"How will we cope?" Couples With Intellectual Disability Where One Partner Has a Diagnosis of Dementia.

BACKGROUND AND OBJECTIVES: People with intellectual disability are at increased risk of dementia at an earlier age. This is the first study to explore experiences of couples with an intellectual disability when one partner has dementia. RESEARCH DESIGN AND METHODS: Four people with intellectual disability whose partner had dementia and one partner who had both an intellectual disability and dementia took part in narrative life story interviews. One of the interviews was conducted as a couple giving direct perspectives from 4 couples overall. Additionally, 13 semistructured interviews were conducted with 9 social care professionals and 4 family members. This provided perspectives of the relationships of a further 4 couples, which collectively led to data on 8 couples. RESULTS: The emotional impact of a dementia diagnosis, planning for the future, and fear of separation was noted by couples with intellectual disability. Partners took on caring roles thus challenging views of being solely care-receivers. Families spoke of commitment and longevity in relationships, whilst social care staff highlighted how their own information needs changed recognizing the importance of intellectual disability and dementia-specific knowledge. DISCUSSION AND IMPLICATIONS: Couples with intellectual disability continue to enjoy intimate relationships into later life and will face common conditions in older age including dementia. Those who provide support need to ensure that they are sensitive to the previous experience and life story of each couple and have specific knowledge of how dementia can affect people with intellectual disability.

" Exercise opportunities became very important": Scottish older adults' changes in physical activity during Covid19'.

BACKGROUND: The purpose of this study was to explore perceived changes in physical activity (PA) due to Covid19 stay-at-home and social distancing guidance among older adults. METHODS: Participants (n = 1429, 77% female, 84% ≥60 years) living in Scotland completed an online survey in Summer 2020 measuring PA and wellbeing (indexed through loneliness, and health-related quality of life). The survey included open- and closed-ended questions about how these variables changed in response to Covid19 social distancing and 'shielding' guidelines. RESULTS: From the International Physical Activity Questionnaire (IPAQ), the majority reported high volumes of PA, indicative of being 'moderately' or 'highly' active. When asked specifically about strength training, 12% reported engagement on ≥2d/wk. Most participants reported that PA had changed during this time, citing reduced use of exercise facilities, increased active travel, and online PA classes; although only 16% reported engaging in PA online. CONCLUSIONS: Higher levels of PA were found to be associated with better health-related quality of life. Additional efforts should be made to support PA engagement in older adults, including strength training and other tailored approaches to support individual needs.

Loneliness, Wellbeing, and Social Activity in Scottish Older Adults Resulting from Social Distancing during the COVID-19 Pandemic.

This study examined the impact of social distancing during the COVID-19 pandemic on loneliness, wellbeing, and social activity, including social support, in Scottish older adults. A mixed methods online survey was used to examine these factors during social distancing mid-lockdown, July 2020. Participants were asked to state whether loneliness, wellbeing, social activity, and social support had changed since pre-social distancing, and to provide details of strategies used to keep socially active. A total of 1429 adults (84% aged 60+ years) living in Scotland took part. The majority reported that social distancing regulations made them experience more loneliness and less social contact and support. Loneliness during lockdown was higher than reported norms for this age group before the pandemic. A larger social network, more social contact, and better perceived social support seemed to be protective against loneliness and poor wellbeing. Positive coping strategies reported included increasing online social contact with both existing social networks and reconnecting with previous networks, as well as increasing contact with neighbours and people in the community. This underlines the importance of addressing loneliness and social support in older adults but particularly during situations where risk of isolation is high.

Understanding the training and education needs of homecare workers supporting people with dementia and cancer: A systematic review of reviews.

Many people with dementia, supported by family carers, prefer to live at home and may rely on homecare support services. People with dementia are also often living with multimorbidities, including cancer. The main risk factor for both cancer and dementia is age and the number of people living with dementia and cancer likely to rise. Upskilling the social care workforce to facilitate more complex care is central to national workforce strategies and challenges. Training and education development must also respond to the key requirements of a homecare workforce experiencing financial, recruitment and retention difficulties. This systematic review of reviews provides an overview of dementia and cancer training and education accessible to the homecare workforce. Findings reveal there is a diverse range of training and education available, with mixed evidence of effectiveness. Key barriers and facilitators to effective training and education are identified in order to inform future training, education and learning development for the homecare workforce supporting people with dementia and cancer.

The Intersection of Intellectual Disability and Dementia: Report of The International Summit on Intellectual Disability and Dementia.

An International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland (October 13-14, 2016), drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (a) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with ID), (b) individualized services and clinical supports (advancing and advanced dementia, post-diagnostic supports, community supports and services, dementia-capable care practice, and end-of-life care practices), and (c) advocacy, public impact, family caregiver issues (nomenclature/terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into a series of publications and topical summary bulletins designed to be international resources, practice guidelines, and the impetus for planning and advocacy with, and on behalf of, people with ID affected by dementia, as well as their families. The general themes of the conceptual areas are discussed and the main recommendations are associated with three primary concerns.

Highlights from the International Summit on Intellectual Disability and Dementia Implications for Brazil.

In October of 2016, an interdisciplinary group representing North and South American and European countries met in Glasgow, Scotland, to scrutinize universal issues regarding adults with intellectual disability (ID) affected by dementia and to produce recommendations and guidelines for public policy, practice, and further research. The aim of this paper is to apprise relevant outcomes of the Summit targeting Brazilian researchers, clinicians, and nongovernmental organizations in the field of ageing and dementia that are committed to developing the Brazilian national dementia plan. Three core themes were covered by the Summit: i) human rights and personal resources, ii) personalized services and caregiver support, and iii) advocacy and public impact. The exploration of the themes highlighted variations across countries, and revealed consensual views on matters such as international networks, guidance for practices, and advocacy on behalf of both people with ID affected by dementia, and their families. The authors outline the challenges Brazil must confront regarding ageing and dementia and proffer recommendations to address the needs of adults with ID affected by dementia within this scenario; both of which would help in developing the Brazilian national dementia plan.

Em outubro de 2016, um grupo interdisciplinar representando países da América do Norte e do Sul, bem como Europeus reuniu-se em Glasgow, na Escócia, para examinar questões relativas aos adultos com deficiência intelectual (DI) afetados por demência e para produzir recomendações e diretrizes referentes às políticas públicas, práticas e pesquisa. O objetivo deste artigo é informar os resultados relevantes da Cúpula aos pesquisadores, clínicos e organizações não-governamentais brasileiras que atuam no campo do envelhecimento e da demência, e estão envolvidos no desenvolvimento do plano nacional de demência. Três temas centrais foram discutidos na Cúpula: i) Direitos humanos e recursos pessoais, ii) Serviços personalizados e apoio aos cuidadores, e iii) Advocacia e impacto público. A exploração dos temas destacou as variações entre os países e revelou visões consensuais em questões como redes internacionais, orientação para práticas e defesa de direitos em nome de pessoas com DI afetadas por demência e suas famílias. Os autores descrevem os desafios que o Brasil deve enfrentar em relação ao envelhecimento e à demência e apresentam recomendações para atender às necessidades de adultos com DI afetados por demência nesse cenário; ambos aspectos contribuem para o desenvolvimento do plano nacional de demência.

Quality Care for People with Intellectual Disability and Advanced Dementia: Guidance on Service Provision.

Purpose of Report: The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorized as that stage of dementia progression characterized by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. The questions before the summit were whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population. FINDINGS: The summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals pre-existing level of intellectual impairment, that is, totally unrelated to dementia. Hence, the summit agreed that it is imperative that change is measured from the person's prior functioning in combination with clinical impressions of decline and of increasing comorbidity including particular attention to late onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognize the greater likelihood of physical symptoms, comorbidities, immobility, and neuropathological deterioration. SUMMARY: The summit recommended an investment in research to more clearly identify measures for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers, and identify additional markers that may help signal decline and progression into advanced dementia among people with various levels of pre-existing intellectual impairment.

Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature.

A working group of the 2016 International Summit on Intellectual Disability and Dementia was charged to examine the terminology used to define and report on dementia in publications related to intellectual disability (ID). A review of related publications showed mixed uses of terms associated with dementia or causative diseases. As with dementia research in the non-ID population, language related to dementia in the ID field often lacks precision and could lead to a misunderstanding of the condition(s) under discussion, an increasingly crucial issue given the increased global attention dementia is receiving in that field. Most articles related to ID and dementia reporting clinical or medical research generally provide a structured definition of dementia or related terms; social care articles tend toward term use without definition. Toward terminology standardization within studies/reports on dementia and ID, the Summit recommended that a consistent approach is taken that ensures (a) growing familiarity with dementia-related diagnostic, condition-specific, and social care terms (as identified in the working group's report); (b) creating a guidance document on accurately defining and presenting information about individuals or groups referenced; and

International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans.

The World Health Organization (WHO) has called for the development and adoption of national plans or strategies to guide public policy and set goals for services, supports, and research related to dementia. It called for distinct populations to be included within national plans, including adults with intellectual disability (ID). Inclusion of this group is important as having Down's syndrome is a significant risk factor for early-onset dementia. Adults with other ID may have specific needs for dementia-related care that, if unmet, can lead to diminished quality of old age. An International Summit on Intellectual Disability and Dementia, held in Scotland, reviewed the inclusion of ID in national plans and recommended that inclusion goes beyond just description and relevance of ID. Reviews of national plans and reports on dementia show minimal consideration of ID and the challenges that carers face. The Summit recommended that persons with ID, as well as family carers, should be included in consultation processes, and greater advocacy is required from national organizations on behalf of families, with need for an infrastructure in health and social care that supports quality care for dementia.

Developing Evidence for Football (Soccer) Reminiscence Interventions Within Long-term Care: A Co-operative Approach Applied in Scotland and Spain.

Loneliness is a common experience within long-term care and, to promote well-being and quality of life among people with dementia, it is important to draw upon a repertoire of strategies that provide social stimulation, companionship, and enjoyment. This paper describes and reflects on a program of co-operative social participatory research that sought to introduce football-focused (ie, soccer-based) reminiscence based in 4 community settings within Spain and Scotland. Findings are reported and inform an original conceptual model that supports the introduction of sustainable approaches to the development of football-focused reminiscence with and for people with dementia.

Highlights from the International Summit on Intellectual Disability and Dementia: implications for Brazil / Síntese da Cúpula Internacional sobre Deficiência Intelectual e Demência: implicações para o Brasil

ABSTRACT In October of 2016, an interdisciplinary group representing North and South American and European countries met in Glasgow, Scotland, to scrutinize universal issues regarding adults with intellectual disability (ID) affected by dementia and to produce recommendations and guidelines for public policy, practice, and further research. The aim of this paper is to apprise relevant outcomes of the Summit targeting Brazilian researchers, clinicians, and nongovernmental organizations in the field of ageing and dementia that are committed to developing the Brazilian national dementia plan. Three core themes were covered by the Summit: i) human rights and personal resources, ii) personalized services and caregiver support, and iii) advocacy and public impact. The exploration of the themes highlighted variations across countries, and revealed consensual views on matters such as international networks, guidance for practices, and advocacy on behalf of both people with ID affected by dementia, and their families. The authors outline the challenges Brazil must confront regarding ageing and dementia and proffer recommendations to address the needs of adults with ID affected by dementia within this scenario; both of which would help in developing the Brazilian national dementia plan.

RESUMO Em outubro de 2016, um grupo interdisciplinar representando países da América do Norte e do Sul, bem como Europeus reuniu-se em Glasgow, na Escócia, para examinar questões relativas aos adultos com deficiência intelectual (DI) afetados por demência e para produzir recomendações e diretrizes referentes às políticas públicas, práticas e pesquisa. O objetivo deste artigo é informar os resultados relevantes da Cúpula aos pesquisadores, clínicos e organizações não-governamentais brasileiras que atuam no campo do envelhecimento e da demência, e estão envolvidos no desenvolvimento do plano nacional de demência. Três temas centrais foram discutidos na Cúpula: i) Direitos humanos e recursos pessoais, ii) Serviços personalizados e apoio aos cuidadores, e iii) Advocacia e impacto público. A exploração dos temas destacou as variações entre os países e revelou visões consensuais em questões como redes internacionais, orientação para práticas e defesa de direitos em nome de pessoas com DI afetadas por demência e suas famílias. Os autores descrevem os desafios que o Brasil deve enfrentar em relação ao envelhecimento e à demência e apresentam recomendações para atender às necessidades de adultos com DI afetados por demência nesse cenário; ambos aspectos contribuem para o desenvolvimento do plano nacional de demência.

Caring for older people with an intellectual disability: a systematic review.

This review critically evaluates the available research literature on aging among people with an intellectual disability. 42 papers meeting the review inclusion criteria are presented under three themes: studies with a service user perspective (13), studies of carers of older people with ID (14) and studies of service provision for older people with ID (15). User view specific findings relate to concerns about accommodation; experiences of services; and perceptions of aging; with a common underlying finding from all user focused themes that of unmet need. Carer specific findings relate to fear of the future; experiences of older carers; and planning for the future. Services themes reflect the debate over specialist or generalist services as people age; accommodation; retirement from day services; and staff training. Overall this review reveals a lack of robust research evidence concerning the lives of older people with ID and a need for more research that directly engages with older people with ID and their carers.