The national charity warns that a gathering ‘momentum of change’ will be lost unless statutory and voluntary sector agencies redouble their efforts to improve dementia care.
‘Dementia 2015: Aiming higher to transform lives‘ is Alzheimer’s Society’s fourth annual report looking at quality of life for people with dementia in England. It provides a snapshot of how well people are living with dementia, what support they are receiving and what barriers they face to living well.
The report highlights how patients, families and carers are often left confused by the health and social care system, and how patients often have to rely on family and friends for support as they do not get enough help from health and social care services.
In a survey of over 1,000 GPs, seven in ten said that people with dementia are left unsupported because of a shortfall in accessible local services, while 61% say lack of cooperation between the NHS and social care acts as a barrier to patients getting support.
More than three-quarters (77%) of GPs said their patients are having to rely on family members as they don’t get enough support from health and adult social services. A similar number (73%) said they have to rely on unpaid carers (friend, neighbours etc).
However, a survey of people with dementia found that half said their carer did not receive help.
Jeremy Hughes, chief executive of Alzheimer’s Society, commented: “GPs report an endemic and deeply worrying lack of support available from health and social services, with relatives left to pick up the pieces alone.
“People can need a lot of help to live well with dementia. Families and friends are a vital source of support but they mustn’t be relied on to do everything. As dementia takes hold, people with dementia and their carers look to statutory services to give them the back-up they desperately need to cope.
“With the number of people with dementia expected to grow to one million by 2021, there is no time to waste. Today’s findings reinforce the urgency of putting in place meaningful care and support for all people with dementia.”
In addition to calling for a national action plan to combat dementia over the next five years, the charity has made a number of other recommendations in the report, including:
- NHS England and local authorities to ensure everyone diagnosed with dementia is entitled to a full package of support including a dementia adviser
- a single point of contact to help carers navigate the health and social care system
- all hospitals, care homes and home care to be dementia friendly.
End of life care
A small section of the report focuses on end of life care, referencing recommendations from the Health Select Committee inquiry into end of life care and the review of choice in end of life care, as well as the 2014 report by Marie Curie and Alzheimer’s Society, which highlighted barriers in identification, access to palliative care and in the quality of care that was received.
The report calls for the implementation of the recommendations of the choice review, including 100% coverage of Electronic Palliative Care Co-ordination Systems (EPaCCS) by the end of 2018, and for central government to take action to remove the barriers to co-ordinated care at end of life for people with dementia.
Referring to the small percentage of people with dementia who spend their final days in a hospice, the report suggests that “hospices should know how to work with people with dementia, and people with dementia should have clear choices around their preferred place of death.”
Leave a Reply