A scoping review of post-diagnostic dementia supports for people with intellectual disability

Dennehy, Holly; Allen, Andrew P.; McGlinchey, Eimear; Buttery, Nadine; García-Domínguez, Laura; Chansler, Rachael; Corr, Christina; Dunne, Pamela; Kennelly, Seán; Daly, Louise; McCallion, Philip; McCarron, Mary

doi:10.1080/13607863.2022.2130171

Cited by 3 publications

(2 citation statements)

References 64 publications

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“…However, it is important to recognise that, unfortunately, institutional services and homes do not always meet the specific needs of people with intellectual disabilities living with dementia. This lack of dementia-friendly environments and inadequate resources poses significant challenges to ensuring that these individuals can age comfortably in place (Dennehy et al, 2022;Haveman & Stöppler, 2020). Therefore, as also stated by the interview participants, the environment ought to be adapted to the needs of people with intellectual disabilities and dementia.…”

Section: Shifting Focus To Maintaining Quality Of Lifementioning

confidence: 99%

Intellectual disabilities and dementia: New tasks and experiences of Austrian formal caregivers

Pendl,

Glatz,

Gasteiger‐Klicpera

2023

Research Intellect Disabil

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BackgroundIn Austria, due to its history, only relatively little research on the topic of intellectual disabilities and dementia has been conducted to date. The present study thus aims to explore the challenges and tasks currently facing formal caregivers, together with assessing their wishes for further development.MethodsTen semi‐structured interviews were held with formal caregivers. Interviews were transcribed and analysed by means of structured qualitative content analysis.ResultsCaregivers must deal with conflicts between residents, and with increasing demands for care and emotional support. Education and training on dementia and intellectual disability are mostly of high quality, but still remain insufficient. Caregivers would like to see suitable adaptation of care premises, smaller groups, more staff and better training on dementia and intellectual disability.ConclusionTo ensure quality care and ‘ageing in place’, caregivers and providers need to pay greater attention to dementia‐related changes when planning and adapting services.

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Section: Shifting Focus To Maintaining Quality Of Lifementioning

confidence: 99%

Intellectual disabilities and dementia: New tasks and experiences of Austrian formal caregivers

Pendl,

Glatz,

Gasteiger‐Klicpera

2023

Research Intellect Disabil

View full text Add to dashboard Cite

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“…Even for functional decline, changes in performance may be dismissed as ‘just a part of’ intellectual disability 12 . A lack of screening for or detection of dementia in people with intellectual disability will result in harm; for example, in such circumstances, people with intellectual disability have less timely access to post‐diagnostic supports for dementia; these include interventions, therapies and environmental supports 13 . This in turn can have negative effects on families and caregivers of people with intellectual disabilities, and on health and social care systems.…”

Section: Introductionmentioning

confidence: 99%

Cognitive reserve and dementia risk management in people with an intellectual disability

Allen

McGlinchey

Fallon

et al. 2023

Int J Geriat Psychiatry

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� Dementia risk is elevated in people with intellectual disability, particularly for those with Down syndrome � Differences in lifestyle factors have been cited as factors that exacerbate dementia risk in people with intellectual disability � Lifestyle factors can be targeted to enhance cognitive reserve and reduce dementia risk for people with intellectual disability | INTRODUCTIONOver the 20th century, and into the 21st, the longevity of people with an intellectual disability has shown a remarkable, although not always sustained, increase from an average of 30 years in the past to over 60 years today. 1,2 Longer life also means vulnerability to some negative health developments and disorders associated with ageing, including dementia; a longitudinal study of people with Down syndrome (the most common genetic cause of intellectual disability) estimated the cumulative risk to be 88% by age 65 3 with mean age of diagnosis of 55 years. 3,4 Onset age for people with intellectual disability without Down syndrome is closer to ages for the general population, but incidence is estimated to be as much as five times higher than the general population. 5 In addition to heightened dependency, people with Down syndrome who develop dementia have also been found to have a higher number of comorbid health conditions 3,6 and increased mortality rates. 7 However, there remains large variation in the clinical presentation and confirmed diagnosis of Alzheimer's disease, with rate of disease progression and related decline often unclear and poorly understood in people with intellectual disability.Dementia is challenging to detect or diagnose in this population, 8 as clinicians cannot simply use the same assessments employed with the general population, which depend on an assumed minimum This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

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Preliminary feasibility study of a cognitive stimulation therapy programme for older adults with an intellectual disability

MacHale,

NíNeill,

Wyer

et al. 2024

Research Intellect Disabil

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BackgroundDespite the increased risk for people with an intellectual disability developing dementia, post‐diagnostic psychosocial supports such as cognitive stimulation therapy (CST) are not routinely offered and there is limited research examining this intervention with people with intellectual disabilities. The aim of this study was to explore the feasibility of CST for older adults with intellectual disability to support active ageing.MethodsFive client participants attended a 14‐session CST group and four staff attended a focus group. Reflexive thematic analysis was used to investigate the client and staff narratives.ResultsThree key themes were generated: (1) Brain Health, (2) Connecting with others, and (3) Barriers and Enablers.ConclusionFindings indicated the suitability of CST as a way of supporting active ageing for older adults with intellectual disability. This study adds to the growing knowledge about service provision for older adults and their changing needs as they age and identifies clinical implications such as staff training to support intervention adherence.

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A scoping review of post-diagnostic dementia supports for people with intellectual disability

Cited by 3 publications

References 64 publications

Intellectual disabilities and dementia: New tasks and experiences of Austrian formal caregivers

Intellectual disabilities and dementia: New tasks and experiences of Austrian formal caregivers

Cognitive reserve and dementia risk management in people with an intellectual disability

Preliminary feasibility study of a cognitive stimulation therapy programme for older adults with an intellectual disability

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