According to research published today by national charity Dementia Carers Count, over three quarters of dementia carers do not have any contingency plans in place for when they are unable to care.
The charity surveyed over 1,200 dementia carers about their experiences of caring. The findings show that most unpaid dementia carers are family members looking after a spouse or partner (47%) or a parent (45%). Over half (52%) are caring without any support and many have their own health issues. Over a quarter (28%) of respondents consider themselves to be disabled.
Many feel anxious about the future. A third can see a time ahead when their physical health will impact their ability to care and a third are looking at a future when their mental health will prevent them from being able to continue caring. Some are even prevented from accessing the healthcare they need, because they have no one to look after their loved one.
Lisa* said: “I was urgently referred for surgery, but I found it impossible to synchronise alternative care arrangements for my husband who has mixed dementia and Alzheimer’s and cannot be left on his own. In the end, I gave up and asked to come off the treatment list. You ask yourself – is it worth the hassle? If the answer is ‘no’ then there is something very wrong with the system.”
Frances Lawrence, CEO, Dementia Carers Count said: “We continue to rely on family carers to look after a growing number of people living with dementia. What happens when they can’t care? Carers like Lisa should not be caring at the expense of their own health or worrying about the future if they aren’t there to care. If there’s a crisis, decisions can be made that might not be right for the person with dementia who suddenly needs alternative care.
“This has to change. We have recommendations about how government, local authorities, health and care commissioners and health and social care professionals can help dementia carers consider and agree alternative care arrangements. Having contingency plans agreed in advance and shared should help health and social care systems plan for what is needed in different localities across the UK.”
For more information and interviews contact Iona-Jane Harris on 07775 517 513 or email iona-jane.harris@dementiacarers.org.uk
