People with learning disabilities are now living significantly longer. The population of older people with learning disabilities will increase 4 times faster than the overall adult learning disability population (People with learning disabilities in England, Emerson and Hatton 2008). As they grow older, people with learning disabilities have many of the same age-related health and social care needs as other people but they also face specific challenges associated with their learning disability. Many people with learning disabilities, especially those with milder disability, are not known to health or social services (People with learning disabilities in England 2013, Public Health England 2014), whereas others may find it difficult to express their needs and be heard. Management of their needs will therefore be more complex than for other populations. This will create substantial pressure on services, which has not yet been fully quantified.
People with learning disabilities have a poorer health profile than the general population. For example, there is a high prevalence of dementia in people with Down's syndrome. Practitioners may have difficulty distinguishing the symptoms of a condition such as dementia from those associated with learning disabilities, or with other mental health difficulties. People with learning disabilities may also have poorer health resulting from lifestyle issues such as diet and exercise for which they have not received enough advice and support.
People with learning disabilities also face barriers to accessing healthcare, including health and dental checks. The Michael report on Healthcare for all: independent inquiry into access to healthcare for people with learning disabilities (2008) and the subsequent Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD, Heslop et al. 2013) identified a failure of services to take account of the needs of people with learning disabilities and make reasonable adjustments. This led to misdiagnosis and, in some instances, premature death. People with learning disabilities may have an increased risk of mortality from conditions associated with their learning disability (for example, epilepsy and aspiration pneumonia). Such conditions are often diagnosed late in the course of illness.
Adults with learning disabilities are far more likely to have sensory impairment compared with the general population, but are less likely to access sight or hearing checks, particularly if they are living independently or with family. Sensory impairment is also a barrier to accessing services.
Older people with learning disabilities also have particular housing and social support needs. Two‑thirds of adults with learning disabilities live with their families, usually their parents. In some instances, they may be caring for an older frail parent while they too are getting older. Eventually, ageing family carers may reluctantly explore alternative care arrangements when they are no longer able to provide long-term care. More serious is when family care ends through parental illness or death and, due to lack of future planning, the person may be moved inappropriately, or have multiple moves.
For people living in homes designed for adults with learning disabilities, these may be considered unsuitable for them as they age, which can lead to a move. Older people with learning disabilities are thus likely to be placed in older people's residential services at a much younger age than the general population, even though this may not meet their preferences or needs, especially in relation to communication, support and activities.
The purpose of this guideline is to help commissioners and providers identify, plan and provide for the care and support needs of people growing older with learning disabilities and their families and carers. It covers integrated commissioning and planning; service delivery and organisation; providing accessible information, advice and support; identifying and assessing people's changing needs; care planning; and supporting access to services including health, social care, housing and end of life care. It aims to ensure that people with learning disabilities are given the help they need to access a range of services as they grow older so they can live healthy and fulfilled lives.
The guideline covers care and support in all settings, including people's homes and family homes, temporary accommodation, supported living (including the KeyRing network and Shared Lives schemes) and specialist accommodation. It also covers day services, residential and nursing homes, and primary and secondary healthcare.
A specific age limit is not used in this guideline because adults with learning disabilities typically experience age-related difficulties at different ages, and at a younger age, than the general population. The guideline does not cover people on the autistic spectrum who do not have a learning disability.
This guideline complements statutory duties and good practice as set out in relevant legislation and guidance. The recommendations cross-refer to legislation and other guidance where appropriate. Relevant legislation and guidance includes:
Safeguarding is the responsibility of all practitioners. Practitioners must be familiar with, and follow, their local safeguarding procedures.
You can also see this guideline in the NICE Pathway on care and support of older people with learning disabilities.