Frances Lawrence, Chief Executive at Dementia Carers Count, a charity supporting those who care for loved ones with dementia, shares why a lack of future planning support is keeping thousands of dementia carers awake at night—and why urgent action is needed to protect both carers and the people they care for.
We carry out annual surveys* of dementia carers to continually build on our understanding of the challenges carers are experiencing. This enables us to adapt our carer support services and campaign for changes that are urgently needed.
Often our survey findings amplify what we know – namely that many family carers are not getting the support that they need – whether this is practical, financial or emotional, many are struggling to cope, reaching crisis points and feeling overwhelmed and alone.
This time round, when we reviewed the 1,200+ responses we received, what really jumped out was the fact that over three quarters of dementia carers have no alternative plans in place for either the short term or longer term if they can’t care.
This is extremely concerning. Especially as one in two carers told us that there is no-one else available to care and one in three carers shared that they could see a time ahead when either their physical health or their mental health would prevent them from being able to continue caring.
These carers are extremely anxious about what the future holds for the person they are caring for and what their caring responsibilities mean for their own health needs.
“I worry a lot about what would happen if I became ill – in fact I lie awake for hours on many occasions because of this…” Anonymous dementia carer
Another carer shared that they had to cancel surgery as there was no alternative care available for their husband, who couldn’t be left alone overnight.
“Getting everything synchronised is impossible. It’s like pinning clouds to a wall. It’s very stressful for an already stressed person who can no longer think straight and is frightened.” Lisa* dementia carer (*name changed)
With dementia prevalence on the increase, we need to tackle this growing crisis. Not only are dementia carers worried and anxious, but there are serious safeguarding concerns to consider about what happens to individuals with dementia, if there is no plan in place for when their only carer isn’t there to care.
What happens if families are not known to social services? If no care needs assessments have taken place? If there have been no conversations about future plans? If there is no understanding of an individual’s best interests because carers have not been supported and spoken to?
Everything that is needed is already outlined in the Care Act 2014 and NICE guidelines, but there is still a real need to translate what should be happening into reality.
At Dementia Carers Count, we believe that national carers’ strategies are vital. These should outline the support all carers should receive and ensure that carers are not only known to health and social care professionals, but that they are contacted on a regular basis. It’s really important that carers can build relationships with professionals who understand dementia and can discuss what support a carer might need as their circumstances change. This includes being able to consider and develop flexible alternative care options. Contingency plans need to be recorded in carers’ health and care records and shared with all involved in providing care to the person with dementia when needed.
At the moment, one in four dementia carers aren’t able to talk to a health or social care professional about caring options as their responsibilities change. This isn’t right. Regular conversations and contact are critical to stopping carers’ sleepless nights. While carers are doing their best to provide the care and support needed by their spouse or partner, parent, sibling or friend, we will speak up for what they tell us they need.
