As a report this week from Alzheimer’s Society sets out starkly, there are 800,000 people with dementia – a figure that will pass one million in the next decade. Of these, over 300,000 – more than the population of Cardiff – live in a care home. Their experience of life ‘in care’ varies too widely, with only one in four family members believing quality of life in care is good, and many reports of dementia patients living ‘unstimulating’ lives. The report also highlights that far too often patients actually deteriorate when they enter care, so it is unsurprising that 70% of people fear going into residential care in the future.
Care home alternative
This report should focus attention on the importance of urgently improving care homes, but it should also encourage healthcare professionals to question whether there may sometimes be a better option for dementia patients than a care home placement. Often the decision to enter residential care is made in a crisis and when family carers are unable to cope. At this time it is vital to ensure that people with dementia – and their families who often have to make decisions – have the choice to live with support in the community as long as possible, if that is their preference.
There are a range of services that can support people with dementia – and crucially their families and carers – that are too often overlooked or under-provided, leading to rushed decisions to go into a care home (and a rushed choice of home). Dementia cafes – based on a Dutch model – have sprung up across the country allowing people to meet and socialise in a welcoming community environment. But when a crisis – be it a broken bone or a bout of depression – hits a family already struggling to cope with dementia, they need a more personalised support to help them through the tough times.
A dementia support service is currently being piloted in Shropshire, supported by the local CCG, where British Red Cross volunteers have been trained in dementia awareness by the Alzheimer’s Society and offer time-limited support at home to people with dementia and their carers during times of crisis. This support might include ‘check and chat’ phone calls, befriending support and therapeutic care massage. On many occasions, the support is specifically for the carer alone.
The service is still in its first year, and awareness amongst local GPs is still too low, but for those who have been helped it has been a lifeline. ‘I would have broken down,’ reports one carer. ‘I would have cracked,’ said another, ‘I could not have done without it’. For these families care in their own homes allowed them to build their resilience and remain independent for much longer than would have been possible if the only option was a care home.
Support at home services
This type of ‘low-level’ (but high impact) support, for people who want to remain together at home but struggle in times of crisis, fits the government’s agenda for a preventive and integrated health and care system. It is one of the many voluntary services that form the bedrock of local community support but have historically depended on hand-to-mouth funding from different sources. Research by Deloitte shows that Red Cross support at home services save commissioners £1.50 for every £1 invested, through reduced acute and care home admissions. These savings split between health and social care, so have sometimes been seen as a nicety for PCTs or local authorities looking at their own short-term budgets. A survey for the Red Cross last year found that 85% of GPs think support for people with these kind of lower-level needs is being cut.
In the new commissioning world, integrated preventive care should be core to the health and wellbeing board agenda – building on existing community assets, joining up physical, mental and social care and preventing the deterioration of wellbeing rather than waiting for acute and residential care to pick up the (expensive) pieces. For GPs and health and wellbeing boards concerned with long-term wellbeing and integrated care, valuing and enhancing voluntary-based community support can make a real difference. Just as the government has protected public health funding, we think preventive care and support should be properly resourced and safeguarded.
For a humanitarian organisation – and for the volunteers, clinicians and families we work with – the financial case is always secondary to the principle that people in crisis should not be ignored until it is too late. That is why we need to act now so that the next generation does not have to live in fear of a rising tide of dementia.
- By Joe Farrington-Douglas, head of policy at the British Red Cross.