Why it's important to review the care of people with dementia
Over 850,000 people live with dementia in the UK.
There are many different types of dementia, but what they have in common is that they worsen over time and there is no known cure.
As people's lives change drastically over time, the effects of the condition on them and their carers can be significant. This is why people with dementia need to have regular care reviews so their needs continue to be met.
The Care Act 2014 states that everyone who uses social care must have at least review each year, but this doesn't always happen.
What we did
To find out whether people are getting the right dementia support as their condition deteriorates we reviewed:
- What over 700 people told us about their care
- We analysed data from 97 councils about whether people's needs are being assessed and reviewed
What we found
Fewer than half of all people with dementia who use social care are getting the regular care review they are entitle to.
Councils must ensure that these reviews are happening in a timely fashion, to meet the requirements of the Care Act 2014 and to make all care plans responsive to people's changing needs.
- People don't always have a clear understanding of the support available to them and how to acces care.
- On average, people wait over two months between requesting support for dementia from the council, to that support being put in place. However by the time that people ask, they are at crisis point.
- Once people have a care plan, over 45% are reviewed annually.
- People with dementia are more likely to receive unplanned reviews triggered by an emergency or sudden event than general social care users.
- 65% of people with dementia who had a review were referred a full reassessment. However, half of these reassessments led to no change in the level of care and support.
- One third of people with dementia, using long-term care services did not recieve any review, whether planned or unplanned.
Your rights
Finding information and advice about dementia care and how you pay for it can be confusing. Withou guidance, people struggle to understand what social care support is available, what their rights are and what they can expect from services.
Whilst this is common across the social care sector, as dementia affects memory and cognition, there are additional barriers to getting the right information. Many people are also unaware that they may be eligible to access further support through a review, if there is a change in their circumstances over time.
Your rights under the Care Act
- Anyone with appearance of needs, regardless of their financial situation, is entitled to a full assessment for social care from their council.
- The council must maintain a free information and advice service to help people understand the range of care options available in their area, and to plan for the type of support they want.
- People who use long-term social care services should have their care plan reviewed once per year as a minimum, although it's a good practice for care plans to be kept under ongoing review so that care is as responsive as possible.
- Local authorities should also review a person's situation in the event of an emergency or sudden change in circumstances.
- If a review find that someone's needs have deteriorated or improved significantly, it should lead to a full reassessment of need as they may have become eligible for many greater levels of support. For example, a person using a home care service may require more intensive nursing that they were not previously eligible for.
What's it like caring for someone with dementia?
David's story
72-year-old David Walker has been caring for his wife Georgina, 71, at their home in Wiltshire for the last six years. Georgina was diagnosed with Alzheimer’s disease in 2013 and David has been determined to care for his wife at their home for as long as possible.
“I am fortunate that I have developed a good working relationship with Wiltshire Adult Care Services over the past five years with regards to Georgina’s care needs. They have been understanding and flexible, responding to most of the issues that I have raised.
"That relationship is due, in part, to my determination to provide the best possible care for Georgina, at home, with me, until the end. I have no compromise in this, and social care services are supportive of this, and use ‘us’ as an example of where, with the right support, care at home can be successful and preferable.
"But not everyone has the determination that I have. Not everyone has the ability, time or resources to do the research to find out the information they require to get the correct support.
Simon's story
Simon and his family were self-funding his care in a local care home, who were supporting him well with his dementia. However, in 2017 their funds began to run low and they were approaching the £23,250 threshold which entitled them to support from their council.
The council failed to support Simon, with the care that he was receiving either not appropriate or enough to meet his needs to help him live well with dementia. He had been happy in the care home, but as his needs changed and his condition deteriorated, the council was unable to arrange the high-quality specialist care he needed.
Recommendations
- Councils should ensure that everyone with a diagnosis of dementia, with eligible care and support needs in accordance with Care Act guidance, has a personalised care plan in place. This should be subject to at least one planned review per year.
- In accordance with guidance from the National Institute for Health and Care Excellence (NICE), local authorities and social care providers must provide information and advice during the care planning and assessment process in a manner that is clear, transparent and accessible.
- Local government needs to get better at capturing and using data to know whether they are compliant with the Care Act. They need to make sure that people know their rights and where they can go to get support.
- The Department of Health Social Care should review national eligibility thresholds and how consistently they are being used, to ensure that all reviews and reassessments have fair, proportionate and accurate outcomes.
