Social Care Alliance Haringey - for the dignity and rights of people in need -
BRIEFING ON SOCIAL CARE FOR PEOPLE WITH DEMENTIA
Dementia is a degenerative disease of the brain, Alzheimers being the most common one. Some rare dementias affect younger age groups. There are no known treatments able to stop or slow the disease. As the disease progresses people become totally dependent on others for all their needs. Dementia has a huge impact on families and carers, for example their carers may have to stop work or may themselves be elderly with needs. Nationally, not everyone with dementia has a diagnosis. Although the diagnosis rate has increased over the last few years, the UK diagnosis rate is still 69%, the rate being much lower for under 65s. In the UK the number of people diagnosed with dementia is 540,000 (2016/7 figure; about 5% are under 65yrs); the total estimated at 850,000. The cost is estimated to be over £26 billion. The number of people living with dementia is expected to rise as the population ages and life expectancy increases. A 2015 report estimated that 1 in 3 people born in the UK that year will develop dementia during their lifetime. Planning and urgent action is needed if a health and social care crisis is to be avoided. For example, 1 in 4 hospital beds are occupied by people with dementia, and almost 3 in 4 in care homes. In Haringey: Haringey council does not have good data on dementia. The figures come from Dementia UK and Alzheimer Society.
The number of people diagnosed with dementia in Haringey is estimated at 1725 (58 under 65yrs) in 2017; there are up to 800 with dementia yet to be diagnosed. These numbers are estimated to rise by 11.1% to 1915 in 2021 and 2474 in 2030. The estimated increase in Haringey is amongst the highest in London. Of the total diagnosed 55.4% have mild dementia, 32.1% moderate and 12.5% severe dementia. The number for moderate to severe is just under 700; this is where the need for support is greatest. Many live on their own, some isolated and most vulnerable.
Before 2011 there were 5 day centres for the elderly. Two of the day centres were specialist dementia day centres (the Haynes and the Grange) for people with moderate to severe dementia with complex needs. Many in the other day centres had mild to moderate dementia. Only one day centre is now left in Haringey, the Haynes Dementia Hub which also provides a day care service. Before 2011 over 80 people per week with moderate to severe dementia used the day centres. This figure now stands at 34 per week. The Haynes, the only specialist service for dementia, has insufficient capacity, with a maximum daily capacity of 20 users. There are few alternative provisions for people with dementia, especially for those on the severe end of the dementia spectrum when the need for support is greatest. Community day opportunities are unsuitable for people with high-needs dementia. Unprotected environments and untrained staff could pose serious risks. Day centres with expert staff are essential to provide safe and stimulating environments. The approach is to 'manage' demand by diverting users away from council provision, towards care at home, more voluntary services and less professional specialist support. Care at home is likely to mean placing greater reliance on families and carers. In addition to extra care that carers need to provide, there is the much increased risk of social isolation both for the person and their carer.
Support needed: Dementia not only affects people’s memory but also their behaviour, mental and physical health, social life, communication, safety, independence, capacity to make any decisions, capacity to work, capacity to look after themselves, personal care, nutrition, swallowing, walking – almost all aspects of life that increase over time. Many people with dementia live in single person households and are especially vulnerable to become isolated and unsupported. People with dementia, their families and carers, need support services provided by expert staff trained and experienced in dementia in places that are designed for their safety, stimulation and wellbeing. Only with such services will people with dementia be able to stay longer in their homes, minimising demand for more costly services such as NHS.
1)Establish data on numbers of people with dementia in Haringey, including the numbers for moderate and severe dementia.
2)Establish a borough wide plan for services to support dementia based on number of people and their needs.
3)Ensure every person diagnosed with dementia gets a care plan as soon as they are diagnosed. Nationally a third of people diagnosed with dementia do not get care plans.
4) Ensure coordinated continuity of support across NHS and social care throughout the dementia journey.
5)Reintroduce specialist dementia day centres across Haringey based on the numbers of people with moderate to severe dementia.
6) Continue to develop activities that are safe and appropriate for dementia in the community.
7)Re-establish a well-supported respite service.