Planning ahead

Abstract

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. Research suggests that service planning is often incoherent, that many older people with ID and their carers receive poor quality non-specialist care and that staff are inadequately trained to manage the often multiple and complex needs of this user group. There is a considerable co-joined service development and research challenge in this emerging field. If older people with ID and their carers are to receive quality provision, a coherent and well-funded service planning system is required which is underpinned by articulated agency partnerships, informed by good practice developments in the fields of ID, gerontology and dementia care, and linked to evidence about effective models of care and services. The incorporation of the perspectives of users and carers in the planning process is an essential pre-requisite as is a commitment to the development of effective support across the life course of all individuals with ID. de men tia d e m e n t i a © 2005 sage publications www.sagepublications.com vol 4(3) 341-359

Changes in Accommodation Experienced by People with Down Syndrome and Dementia in the First Five Years After Diagnosis

“…While it appears that the "stay at home" option is working, despite not following the principles of "aging in place," it may be due to carers getting some breathing room every now and again rather than the required ongoing support and long term systems that the "aging in place" scenario requires. Hatzidimitriadou and Milne (2005) found that parents wanted to continue as the main carers for as long as possible but needed support and information from services to enable them to do so.…”

“…A lesser number, 36.5%, live in care homes although the number rose with age from 26.6% of those aged between 65-74 to 60.8% for those aged 90 or over. Staff in generic care homes are not trained to work with this younger population who have an intellectual disability (Hatzidimitriadou & Milne, 2005).…”

Physical Activity and Sedentary Behavior in Older Adults With Intellectual Disabilities: A Comparative Study

“…Older adults with ID were over the age of 50, which is the set point determined in literature to be the onset of aging within this population (Grant, 2001;Hatzidimitriadou & Milne, 2005). Older adults without ID were over the age of 65, which is considered "young old" for aging without a disability (Spirduso, Francis, & MacRae, 2005).…”

Last months of life of people with intellectual disabilities: A UK population‐based study of death and dying in intellectual disability community services

“…However, little is known about the rate of death within intellectual disability services, the types of deaths that intellectual disability services typically encounter and the outcomes at the end of life, regardless of cause of death, for those supported within them. Research has also typically focused on people with intellectual disabilities who have had cancer (Tuffrey-Wijne, 2016) and to a lesser extent dementia (Hatzidimitriadou & Milne, 2005;McCarron et al, 2011). Such a focus stems from the cancer origins of modern palliative care and because the dying trajectory associated with cancer is understood well enough to better plan service interventions (Clark, 2007).…”