Older Adults with Intellectual Disabilities: Issues in Ageing and Dementia

Kalsy‐Lillico, Sunny; Adams, Dawn; Oliver, Chris

doi:10.1002/9781118404898.ch17

Cited by 5 publications

(8 citation statements)

References 80 publications

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“…With respect to intervention, the importance of family relationships for persons with ID points to the need to create more opportunities to foster them, by planning activities that bring the families to the service provider centers their children attend in an informal way. Another important issue raised for intervention is the need to address anxiety about the future and the process of ageing experienced by older adults (Kalsy‐Lillico et al, ). Some service providers already offer home support services, which help families to care for and support persons with ID in their homes as their parents age, giving them the possibility of postponing out‐of‐home placements (McCarron & McCallion, ).…”

Section: Discussionmentioning

confidence: 99%

“…Indeed, the average life expectancy of persons with intellectual disabilities has been increasing, leading many children with ID to outlive their parents. For this reason, there is an increasing need to understand how aging occurs and what challenges might emerge for this population and their families (Kalsy‐Lillico, Adams, & Oliver, ). Studies have shown some specific concerns in these families: future planning, health, social life of persons with ID, long‐term living arrangements, and the role of siblings (Jokinen, ; Jokinen & Brown, ).…”

Section: Introductionmentioning

confidence: 99%

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Giving Voice to Persons With Intellectual Disabilities About Family Quality of Life

Correia

Seabra‐Santos

Pinto

et al. 2017

Policy Practice Intel Disabi

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Research in the field of disability should include the voice of individuals with intellectual disabilities (ID), since these individuals are considered to be the experts on their own experiences. Quality of life (QoL) is a worldwide concept that has been studied in many areas, including ID. Since about the year 2000, researchers have studied QoL of families in many countries around the world, but this body of research has mostly reflected the views of the main caregiver of the person with ID. The major purpose of this study was to give voice to persons with ID, and to explore their perspectives about their FQoL. Four focus groups were conducted with 17 men and women with ID (mild and moderate), aged between 16 and 53 years old. Full transcriptions of the focus group discussions were analyzed with the NVivo 10 software. The findings showed that persons with ID identify family relationships as the most important dimension for FQoL and that some differences between younger and older participants existed. Ethical and practical challenges, as well as the implications for research and intervention are discussed. The inclusion of individuals with ID as informants in research is a way to value their point of view, empower them, and recognize the knowledge that they are able to bring to research.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Giving Voice to Persons With Intellectual Disabilities About Family Quality of Life

Correia

Seabra‐Santos

Pinto

et al. 2017

Policy Practice Intel Disabi

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“…Neuropsychological assessment of people with intellectual disabilities, including individuals with Down syndrome, is complex due to the heterogeneous nature of the client group, the lack of robust, standardised, neuropsychological assessment measures, the presence of expressive and receptive communication difficulties and the increased likelihood of floor (and ceiling) effects on formal assessment (Kalsy‐Lillico et al . ). Despite these challenges, several assessment batteries have been produced, aiming to allow a robust neuropsychological assessment of people with intellectual disabilities and Down syndrome (e.g.…”

Section: Introductionmentioning

confidence: 97%

The assessment of executive functioning in people with intellectual disabilities: an exploratory analysis

Bevins

Hurse²

2014

Br J Learn Disabil

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Accessible summary• People with Down syndrome and intellectual disabilities are more likely to get dementia when they are older. This is an illness where people become forgetful and confused. Sometimes people with Down syndrome start to behave strangely at the start of the illness. They have difficulties solving problems or have changes in their behaviour. This is called executive functioning.• We looked at some different tests to see whether they could help us understand whether someone was having problems with their executive functioning skills.• We found that the tests can be useful and that we should be using them with more people. We think that we need to wait for a longer time before finding out whether they can tell us whether someone has dementia or not.• This is important for people with intellectual disabilities as we need to find the right tests to help us diagnose dementia as early as possible. SummaryThe following article details a piece of service development work undertaken as part of the Plymouth Down Syndrome Screening Programme. The work aimed to review the use of three measures assessing executive functioning skills used within the Programme as well as with people without Down syndrome. Three tasks assessing executive functioning (the Weigl, Cats and Dogs, and verbal fluency task) were evaluated. The Weigl task was removed from the Programme and analyses due to floor effects and difficulties in administration. Correlation analyses showed relationships between the Cats and Dogs task and two other measures, cognitive skills as reported by carers and object memory. No relationships were found between the verbal fluency task and other measures. A full consideration is given to these findings, and implications for future practice are considered. Further data are needed to make full conclusions about the value of the tasks in predicting dementia in people with intellectual disabilities and people with Down syndrome. Further recommendations concerning the development of the assessment of executive skills are also considered.ª

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“…Most people with DS and DAD who have behavioral problems, such as aggression, anxiety, agitation, mood changes, and irritability, can be managed with environmental and other psychosocial approaches. 35 Education to caregivers, training in behavioral management, and ongoing professional support can be effective in alleviating the burden on carers and reduce the need for pharmacological interventions. Where psychotropic medications are used, the target symptoms should be clearly recorded.…”

Section: Treatment Of Dadmentioning

confidence: 99%

Challenges faced in managing dementia in Alzheimer’s disease in patients with Down syndrome

Mahmood

Mitra

2016

DNND

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Dementia in Alzheimer’s disease (DAD) is more common in adults with Down syndrome (DS), with characteristically an earlier onset. The treatment of DAD is not too dissimilar in the general population and in people with intellectual disabilities. However, the underlying intellectual disability can make the management of DAD more challenging in older adults with DS. This literature review aimed to look at the management of DAD in people with DS. The management of dementia is holistic. This includes treating reversible factors, aiming to slow the cognitive decline, psychological therapies, ensuring that the environment is appropriate, and use of psychotropic medication when necessary to manage behavioral problems, psychotic symptoms, depressive symptoms, and sleep difficulty. Antidementia medications have a role to play but remain limited. The management of DAD in the DS population can be at times challenging, but good clinical practice should involve accurate diagnosis of dementia, treating any reversible additional factors, consideration of psychological and behavioral management, use of antidementia medication, and a multidisciplinary team approach.

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Older Adults with Intellectual Disabilities: Issues in Ageing and Dementia

Cited by 5 publications

References 80 publications

Giving Voice to Persons With Intellectual Disabilities About Family Quality of Life

Giving Voice to Persons With Intellectual Disabilities About Family Quality of Life

The assessment of executive functioning in people with intellectual disabilities: an exploratory analysis

Challenges faced in managing dementia in Alzheimer’s disease in patients with Down syndrome

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Older Adults with Intellectual Disabilities: Issues in Ageing and Dementia

Cited by 5 publications

References 80 publications

Giving Voice to Persons With Intellectual Disabilities About Family Quality of Life

Giving Voice to Persons With Intellectual Disabilities About Family Quality of Life

The assessment of executive functioning in people with intellectual disabilities: an exploratory analysis

Challenges faced in managing dementia in Alzheimer&rsquo;s disease in patients with Down syndrome

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Product

Resources

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Challenges faced in managing dementia in Alzheimer’s disease in patients with Down syndrome