Downs syndrome

A qualitative interview study was undertaken to determine the information and support needs of carers of adults who have Down's syndrome and dementia. The data were analysed thematically. Carers' information and support needs were seen to change at pre-diagnosis, diagnosis and post-diagnosis. Helping carers to manage the changing nature of the adult with dementia is seen to be an essential part of the health professional's role.

The aim of this study was to investigate the amount of time formal caregivers spend addressing activities of day-to-day care activities for persons with Down's syndrome (DS) with and without Alzheimer's dementia (AD). Caregivers completed for 63 persons with DS and AD, and 61 persons with DS without AD, the Caregiving Activity Survey-Intellectual Disability (CAS-ID). Data was also gathered on co-morbid conditions. Regression analysis was used to understand predictors of increased time spent on day-to-day caregiving.

The authors studied a group of older carers of aging adults with Down syndrome (DS) to ascertain what effects such caregiving may have on them given the presence or possibility of age-associated decline or dementia. The study also examined the comparative levels of care provided, key signs noted when decline was beginning, the subjective burden experienced, and what were the key associated health factors when carers faced a changed level of care.

Despite the acknowledged increase in the number of older people with intellectual disabilities (ID) in the UK, the age-related health and social care needs of this population have yet to be fully understood and addressed. Although there is some evidence of positive development, the current picture of service provision is characterized by fragmentation and limited choice of resources and specialist care. Policy aims are variably met and inconsistently applied.

Background  Dementia is common among adults with Down's syndrome (DS); yet the diagnosis of dementia, particularly in its early stage, can be difficult in this population. One possible reason for this may be the different clinical manifestation of dementia among people with intellectual disabilities.

Aims  The aim of this study was to map out the carers' perspective of symptoms of dementia among adults with DS in order to inform the development of an informant-rated screening questionnaire.

Overall life expectancy for women with intellectual disabilities (ID) is now significantly extended, and many will live long enough to experience menopause. Little is known about how carers support women with ID through this important stage in their lives. This study investigated carer knowledge of how menopause affects women with ID under their care and how they may help them to cope with it.

Services for people with learning difficulties are facing new challenges. These lie not only in the care of severely learning disabled clients, but also in the care of older people with a learning difficulty who develop dementia and support for their families, formal carers and friends.

This paper provides an overview of the GOLD programme at the Foundation for People with Learning Disabilities. It describes the work of the 13 funded projects in a context of wider research concerning ageing and learning disabilities. Particular attention is given to those people living with older family carers and those living in residential services for older people. The picture is of services that offer little confidence for the future, as people with learning disabilities grow older.

Research that has tracked living situation changes is lacking for people with Down syndrome post-diagnosis of dementia. Extant studies have not considered reasons for a move, the stage at which it happened, and how involved in the decision the person with Down syndrome was. To study this, a postal questionnaire was used with 35 carers of persons with Down syndrome in Scotland who had been diagnosed with dementia during the previous five years.

This film focuses on Tim Anfilogoff, the Commissioner for Adult Services at Hertfordshire County Council. Hertfordshire has achieved Beacon status for its work with carers, and this film demonstrates how the council is working with carers, and listening to their experiences and feedback to ensure both the carers and the service users receive the best possible service. It features carer Mari Stevenson who talks about her personal experiences of caring for her daughter who is diabetic and has Down’s Syndrome.