A new report by the charity Alzheimer’s Society has said that support following the diagnosis of dementia is ‘unequal, inconsistent and inadequate’.
The report, called “Left to Cope Alone: The unmet support needs after a dementia diagnosis”, revealed almost three in five (57%) people affected by dementia in the South West did not feel they had received enough support in the last 12 months.
A second survey of another 1,000 people affected by dementia also showed that more than half (54%) of family carers reached crisis point in the last year alone, with families having no idea of the support available.
This left people with dementia at risk of going to hospital with avoidable conditions like falls or urinary tract infections, creating unnecessary pressure on the NHS.
The charity is now calling for every primary care network to use the government’s funding for support roles in primary care to provide at least one dementia support worker in their area.
These are specialists in the community who provide the missing link between people affected by dementia and support after a diagnosis.
Previous research has suggested that just 38% of people with dementia report they are receiving dementia health and care services, highlighting that the help people need isn’t matching the help they’re getting.
Marion Child, Area Manager for the South-West said: “No family affected by dementia should face it alone. Post diagnostic dementia support is unequal, inadequate and inconsistent, leaving families without the necessary care they need to get through some of the hardest and most frightening times of their lives.
“People tell us that a lack of dedicated support means they are relying on the internet to find out about their condition, or that the wellbeing of their loved one with dementia depends on how well they’re ‘doing their homework’ to find support.
“Family carers are at breaking point trying to make sure their loved ones are safe, cared for, while trying to maintain some quality of life.
“People need the right support from the moment of diagnosis. Having a dedicated dementia support worker in every area would plug the gaps we are seeing in primary care, give people the one point of contact to help them navigate the health and social care system and ease pressure on health services.
“Dementia support workers provide a crucial link between the 900,000 people living with dementia, including the 92,510 in South-West England, and post diagnostic support. They are incredibly cost effective – every £1 spent results in £4 worth of benefits.”
Dementia is a complex condition and support needs are often more specialist than those provided by primary care.
They include help with daily tasks, fall prevention, going to community groups and talking therapy to improve wellbeing and prevent mental health crises.
The Alzheimer’s Society claim that this type of support could be arranged through close relationships with dementia support workers, solving the problem previous research found that a third of people with dementia felt they had a healthcare professional they could call on for support at any time.
The Covid-19 pandemic further impacted access to support and caused many people’s dementia to deteriorate faster than expected.
In a survey of over 1,000 people affected by dementia, over eight in ten (84%) reported a decline in the health and wellbeing of their loved one over the past year, and more than one in four (27%) to an unmanageable level, with carers telling Alzheimer’s Society that not being able to access support during the pandemic led to the person with dementia moving into a care home sooner.
Alzheimer’s Society’s report further confirmed that half of people (49%) of people affected by dementia in South-West England did not feel confident managing their or their loved one’s condition and more than one in five were also unsure when they last had an annual review of their dementia care.
Over half (52%) of those who did have an annual review said it did not help them manage their condition; without an annual review, medication, symptoms and non-medical needs may not be kept in check and people are more likely to end up in crisis.
Alzheimer’s Society employs 719 front-line staff across England, Wales and Northern Ireland, including Dementia Advisers and Dementia Support Workers, who are dedicated support workers providing one-to-one help for people with dementia and their families.
The charity has outlined a number of recommendations in the report, which was funded by the Peter Sowerby Foundation.
The main recommendation is that everyone diagnosed with dementia should have access to a dementia support worker, which is the first point of contact in every primary care network, with automatic referral from memory services.
