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Learning disabilities
Young onset dementia research studies related to learning disabilities
Here you will find a collection of young onset dementia research studies related to learning disabilities. They have been selected by Dr Hilda Hayo from Dementia UK and Professor Jan Oyebode from the University of Bradford. Some of the links we provide are to the abstract only. For a full paper it may be necessary to subscribe to the site or to pay a fee.
‘How will we cope?’ Couples with intellectual disability where one partner has a diagnosis of dementia (2024)
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, click here
Diagnosing Alzheimer’s dementia in Down syndrome: problems and possible Trisomy of human chromosome 21 enhances amyloid-β deposition independently of an extra copy of APP
Around 1 in 800 people are born with Down’s syndrome, which arises in people carrying an extra copy of chromosome 21. By the time they reach their 60s, around two thirds of those with Down syndrome will have early onset Alzheimer’s. The high rates of Alzheimer’s in people with Down’s syndrome were previously thought to be caused by a particular gene on chromosome 21 called APP. Chromosome 21 contains 231 genes, but APP was the prime suspect because it produces amyloid precursor proteins. These are involved in generating amyloid beta proteins, which build up in the brain in Alzheimer’s patients. In this study, published in the journal Brain, researchers found that extra copies of other genes on chromosome 21 increase Alzheimer’s-like brain pathology and cognitive impairments in a mouse model of Down’s syndrome. For the article written by the Francis Crick Institute, click here or for the study, click here
The early presentation of dementia in people with Down’s syndrome: a systematic review of longitudinal studies (2017)
Adults with Down syndrome (DS) are at a very high risk of developing early onset Alzheimer’s disease (AD) due to trisomy of chromosome 21. There is a lack of knowledge of the trajectory of decline associated with the onset of dementia in this population and early signs may be overlooked or misdiagnosed, negatively affecting the quality of life of those affected and the use of early pharmacological or psychosocial interventions. The objective of this systematic review was to evaluate the published literature on longitudinal data in order to identify the cognitive and behavioural changes occurring during the prodromal and early stages of AD in this population. Click here
Assessing dementia in people with learning disabilities: The relationship between two screening measures (2016)
A learning disability dementia battery was developed to assess cognitive abilities in individuals referred to the learning disabilities service because of concerns of possible dementia. The study’s aim was to establish concurrent validity with previously validated measures of cognitive ability and its clinical effectiveness in detecting dementia. Click here
The views of people who care for adults with Down’s syndrome and dementia: a service evaluation (2012)
Adults with Down syndrome (DS) are at a very high risk of developing early onset Alzheimer’s disease (AD) due to trisomy of chromosome 21. There is a lack of knowledge of the trajectory of decline associated with the onset of dementia in this population and early signs may be overlooked or misdiagnosed, negatively affecting the quality of life of those affected and the use of early pharmacological or psychosocial interventions. The objective of this systematic review was to evaluate the published literature on longitudinal data in order to identify the cognitive and behavioural changes occurring during the prodromal and early stages of AD in this population. Click here
“It’s all changed”: carers’ experiences of caring for adults who have Down’s syndrome and dementia (2011)
Undertaken to determine the information and support needs of carers of adults who have Down’s syndrome and dementia. Click here
The needs of people with learning disabilities who develop dementia: A literature review (2011)
A literature review undertaken of articles published between 1996 – 2006. Data was collected relating to the needs of people with learning disabilities and dementia, their carers and their peers. Click here
Diagnosing Alzheimer’s dementia in Down syndrome: problems and possible solutions (2009)
Explores recent developments and provides recommendations which may aid clinicians in their attempts to diagnose Alzheimer’s dementia in the early stages in the Down syndrome population. Click here
Group home care for adults with intellectual disabilities and Alzheimer’s disease (2005)
Examining the means of providing community group home-based care in a sample of care providers in five different countries. Click here
Current research studies
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Simple guide to research
An introductory guide to help you find and understand research on young onset dementia