Older people with learning disabilities and their older carers

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Location

Careys Manor Hotel (walking distance from Brockenhurst train station)

Lyndhurst Road

Brockenhurst

SO42 7RH

United Kingdom

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Event description
"People with Learning Disabilities and / or autism and their carers getting older: confronting a looming crisis"

About this event

Life expectancy for people with learning disabilities in the UK has improved significantly since the 1940s. Consequently, the population of people with learning disabilities who are over the age of 45 has increased and projections say it will continue to increase (including a growth in the number of people over the age of 85 who have a learning disability). As a result, both the actual ages and also the number of aged parents who continue to provide care for their adult children with a learning disability will also rise.

New Forest Mencap commissioned the University of Bath (Professor Rachel Forrester-Jones) with a grant from the Awards for All Lottery funding to carry out research in the New Forest into what services were available locally for older people with learning disabilities; what services are there available locally for older carers of adults with learning disabilities and what gaps or needs in such provision might inform the strategy of New Forest Mencap in order that it can better support both older people with learning disabilities and older carers of people with learning disabilities.

The research discovered themes and sub-themes in the experiences:

• Retirement in terms of a reduction in involvement with the care and support for their loved one does not happen and that this can have subsequent impact on a carer’s health and wellbeing.

• Indeed the role of a “care manager” continues and in some cases increases if the loved one lives in a setting other than the family home.

• Carers who may now be economically inactive are still bearing the financial cost of caring and supporting their adult child with a learning disability in ways such as subsidising required care or services or providing transport

• As carers age the impact of caring increases and the need for a break from providing care and support or from not having to live life in a certain way in order to meet the needs of the adult child that they care for becomes more important. Ageing carers of adults with learning disabilities may also find that they are starting another episode of care for elderly parents or relatives also.

• The Care Act 2014 duties placed on local authorities are not always delivered in a timely, consistent or correct manner.

• That health and social care services could work better together in order to achieve the best outcome for people

• That carers assessments did not appear to reflect a “whole family approach”

• Carers placed a high value on the consistency of the same social worker and on the knowledge and expertise of the social worker and were affected by a constant turnover of staff

• Carers of adults with learning disabilities are fearful about the day when they are no longer around to provide the amount, level and continuation of support they they want for their loved one, whether for a loved one who is in the family home or where they do live separately (as high levels of care and support are still delivered by parents to adults with learning disabilities in residential, supported living or independent living with care services settings)

• Planning for the inevitable death of, or inability of a parent to be involved or involved to the same degree, was a difficult subject. Parent carers needed emotional support, information and options to make plans that they would feel comfortable with. Respondents did not feel that their local authority was active in making plans and preparations for the inevitable demise of care givers but was still wedded to reactive, crisis management, which inevitably increased the stress for those who remained.

New Forest Mencap will be developing a strategy to provide support and services needed by the older carers of people with learning disabilities in the New Forest and is also engaged in an ongoing dialogue with our local authority.

New Forest Mencap calls upon statutory authorities (both adult social care and health) to

• recognise and support the different needs of older people with learning disabilities

• identify and support older carers of adults with learning disabilities with particular attention to supporting the role of “care manager” of older carers for adults with learning disabilities, provide respite, ease the burden on carers (as no adult is obliged to care for another adult) and use a more holistic, family-orientated approach

• be more pro-active and active in developing services (including housing) that meet the needs of older people with learning disabilities

Date and time

Location

Careys Manor Hotel (walking distance from Brockenhurst train station)

Lyndhurst Road

Brockenhurst

SO42 7RH

United Kingdom

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Organiser New Forest Mencap

Organiser of Older people with learning disabilities and their older carers

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