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Self- and proxy reports across three populations: older adults, persons with Alzheimer's Disease, and persons with intellectual disabilities
- Author:
- PERKINS Elizabeth A.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 4(1), March 2007, pp.1-10.
- Publisher:
- Wiley
Self-reports are often used to determine general well-being in both research studies and practice settings. Proxy reports are also used to gain insight into the well-being of persons with physical ill-heath, cognitive impairments, or disabilities. The author reviews the utility and limitations of using self- and proxy reports across three populations: older adults, persons with Alzheimer's disease (AD), and persons with intellectual disabilities (ID). For differing reasons, the use of self- and proxy reports often results in inaccuracies. Among older adults, the level of subjectivity in questions, type of relationship, and levels of carer burden may influence the outcomes, while increasing severity of dementia and decreased deficit awareness may affect data from persons with AD, and question formats, acquiescence, and level of intellectual development may affect data from persons with ID. However, generally, proxy reports can be useful in determining aspects of well-being in people with ID, in people with AD, and in the general older population, as long as researchers keep in mind that factors that can enhance (e.g., experiences/abilities that are more objectively assessed, and attention to question format) or diminish (e.g., experiences/abilities that are more subjectively assessed, severity of dementia, and level of ID) the quality of information obtained. With respect to the use of these techniques with people with ID, the author concludes that careful attention to survey items, especially response format and wording, can greatly enhance self-report completion and proxy concordance.
Psychiatric symptoms of dementia among elderly people with learning disabilities
- Author:
- COOPER Sally-Ann
- Journal article citation:
- International Journal of Geriatric Psychiatry, 12(6), June 1997, pp.662-666.
- Publisher:
- Wiley
Reports on the rate of psychiatric symptoms among elderly people with learning disabilities who have dementia by studying the population of Leicestershire in the UK. Concludes that psychiatric symptoms occur commonly in dementia, can cause significant distress and require recognition, understanding and the development of effective managements.
Supporting mutual caring: a booklet for workers in services who are supporting older families that include a person with learning disabilities
- Author:
- FOUNDATION FOR PEOPLE WITH LEARNING DISABILITIES
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2010
- Pagination:
- 26p.
- Place of publication:
- London
An increasing number of people with learning disabilities are providing regular and substantial care for their ageing relatives. This care ranges from help with personal care, medication, cooking and cleaning, to help with shopping and keeping them company as they go out and about less. In many cases, neither person would be able to remain living independently without this support. This is known as mutual caring. However, mutual caring amongst older families often remains hidden. This booklet highlights some of the main issues facing mutually caring older families and some of the ways that people in different services and roles can make a positive difference. This booklet should be read by anyone who is working in a service or role where they may come into contact with an older family in which a person with learning disabilities is taking on a caring role for their older relative. It focuses on 3 main topics: understanding mutual caring; responding to the challenge of mutual caring; and getting support right for families who are caring for each other.
Need 2 know: mutual caring: supporting mutual caring amongst families that include a person with learning disabilities
- Author:
- FOUNDATION FOR PEOPLE WITH LEARNING DISABILITIES
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2010
- Pagination:
- 7p.
- Place of publication:
- London
A number of people with learning disabilities are providing regular and substantial care for their ageing relatives. In many cases, neither person would be able to remain living independently without this support. This is known as mutual caring. This briefing note sets out the main findings of a project which conducted in-depth studies with older families that include a person with learning disabilities. The aims of the project included directly supporting the development and promotion of good practice in supporting older families to plan for the future where a person with learning disabilities is providing regular and substantial care to an elderly relative. This briefing note sets out some of the main finding of the project. In particular, it lists guidance and strategies to commissioners and care managers on how to develop an effective service response to these families. A conclusion of the project is that the incidence of mutual caring is growing, but its true extent is not known. Mutual care is often not recognised, and responsibility for these families can often fall between older people’s services, learning disability services and carers’ services.
Mutual caring: multimedia resources
- Authors:
- FOUNDATION FOR PEOPLE WITH LEARNING DISABILITIES, (Producer)
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2010
- Pagination:
- DVD, CD ROM
- Place of publication:
- London
This 2-disc set include information developed as part of the Mutual Caring Project. The Mutual Caring Project was set up to help promote recognition of good practice and develop improved service provision for older families where the balance of the caring relationship between the long-term family carer (often a parent) and the person with learning disabilities (normally an adult son or daughter) has changed. This disc set highlights this neglected area and provides evidence of practical approaches that can be used in different settings. Disc 1 is a DVD with video stories of personal experiences and covers: being a carer; person centred planning; carers’ assessments; and group and peer support. Disc 2 is a CD-ROM containing all resources, tools and reports developed as part of the Mutual Caring Project. Resources have been made to help families, people with learning disabilities, staff, commissioners and others and include: Supporting You as an Older Family Carer; Supporting You and Your Family as You Grow Older Together; Supporting You to Support Your Family; Supporting Mutual Caring; Circles of Support and Mutual Caring; and Being a Carer and Having a Carer’s Assessment.
Assessment and characteristics of older adults with intellectual disabilities who are not accessing specialist intellectual disability services
- Authors:
- DODD Philip, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 22(1), January 2009, pp.87-95.
- Publisher:
- Wiley
Individuals with intellectual disabilities (I.D.) who are not accessing any specialist services are a vulnerable group, especially with advancing age. In Ireland, the National Intellectual Disability Database (N.I.D.D.) records the current and future service needs of people with intellectual disabilities, as well as those individuals who are not in receipt of services. This two-part study firstly used the N.I.D.D. to look at the number and characteristics of those older individuals outside services. Following this, a questionnaire was developed to examine the contact and assessment procedures practised with people who are listed on the N.I.D.D. as not requiring any specialist service. Analysis of the database showed that 7.5% of people on the N.I.D.D. with moderate, severe or profound I.D., over the age of thirty and living at home with family were awaiting, or were not in receipt of specialist services. For these people not accessing any services, the questionnaire responses highlighted poor assessment practices including significant periods of time passing between contacts with the individual and limited contact regarding service planning. Specialist services need to be more pro-active in engaging vulnerable older individuals in services. A standardised approach needs to be developed in the assessment and monitoring of individuals and families refusing services.
Characterisation of user-defined health status in older adults with intellectual disabilities
- Authors:
- STARR J. M., MARSDEN L.
- Journal article citation:
- Journal of Intellectual Disability Research, 52(6), June 2008, pp.483-489.
- Publisher:
- Wiley
Older adults with Intellectual Disabilities (ID) have an excess disease burden that standard health assessments are designed to detect. Older adults with ID have a broader concept of health with dimensions of well being in addition to absence of disease in line with the World Health Organization's health definition. This study sought to characterise user-defined health status in a sample of older adults with ID. A user-led health assessment was administered to 57 adults with ID aged 40 years and over. Cluster analysis on user-defined health themes of participation, nutrition and hygiene/self-care identified clear separation of participants into a healthier and a less healthy group. Disease burden and medication use were greater in the less healthy group. The healthier group were taller, stronger and had better vision than the less healthy group. Constipation, urinary incontinence and faecal incontinence were commoner in the less healthy group. There were few significant differences between health groups on the majority of standard physical-examination items. There is considerable overlap between user-defined health and that assessed by standard instruments. In addition, user-defined health encompasses aspects of physical fitness not captured by traditional disease-based health models.
Assessment of mental capacity: who can do it?
- Authors:
- SINGHAL Ankush, et al
- Journal article citation:
- Psychiatric Bulletin, 32(1), January 2008, pp.17-20.
- Publisher:
- Royal College of Psychiatrists
The aim was to determine the point prevalence of mental incapacity and the ‘Bournewood gap’ in general adult and old age mental health in-patients. The correlation of mental capacity assessment between doctors and nurses was investigated. Data were gathered on one census day for all general adult and old age psychiatric in-patients at three hospital sites. Half the sample lacked capacity and one third fell into the ‘Bournewood gap’. The capacity assessment by nurses and doctors correlated highly (=0.719, P=0.0001). ‘Bournewood gap’ patients should have their needs assessed in order to identify and protect their rights. Appropriately trained mental health nursing staff can undertake this assessment.
Bron's legacy - a lesson that must not be ignored
- Authors:
- FLYNN Margaret, et al
- Journal article citation:
- Llais, 77, Summer 2005, pp.3-7.
- Publisher:
- Learning Disability Wales
This article describes Cartrefi Cymru's experience of supporting a tenant with a learning disability in secondary care. It presents a diary of events towards the end of the clients life, and raises concerns about practice at the interface of health and social care in Wales.
Duration of stay and outcome for inpatients on an basement ward for elderly patients with cognitive impairment
- Authors:
- BALL Sue, et al
- Journal article citation:
- Quality in Ageing, 5(2), October 2004, pp.12-20.
- Publisher:
- Pier Professional
- Place of publication:
- Brighton
Reports a prospective study of a consecutive group of 101 patients who died on or were discharged from an acute assessment ward for elderly patients with cognitive impairment. Clinical characteristics were recorded according to an in-patient dementia care pathway, including mini-MOUSEPAD, Crichton activities of daily living, Mini-Mental State Examination and the Burvill physical health score evaluations. Outcome measures were duration of stay, destination on discharge or death on the ward. Mean duration of stay was 7.9 weeks. Self-funding status and lack of behaviourial and psychological complications were associated with reduced duration of. Discharge home was strongly predicted by having a spouse at home, and the need for nursing home other than residential care was related to severity of cognitive impairment. Concludes that patients can expect to stay in hospital for 8 weeks but 2 areas of concern are highlighted: the importance of community rehabilitation funding for patients with memory disorders and the importance of a spouse at home to look after the patient.