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‘Unseen, unheard, unsupported’

Dementia carers lay bare the struggles they face in delivering essential care, and the challenges to their own wellbeing

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Nine in ten dementia carers admit they have reached crisis point at least once during their time caring for their loved ones, new findings have revealed. 

There are around a million people who find themselves in roles as carers for someone with dementia, unpaid roles which come with huge challenges in supporting a person with a number of complexities. 

In the Invisible report, from Dementia Carers Count, the scale of dementia carers feeling “unseen, unheard and unsupported” is laid bare, with 89 per cent facing crisis at least once, and over a quarter regularly confessing to being in crisis. 

“Laugh and the world laughs with you; cry and you cry alone,” said one respondent from the 1,314 dementia carers surveyed. 

Eighty-eight per cent of those surveyed are caring for a close family member – although 58 per cent said this is a role they did not choose. Two in five say they are providing 24/7 care. 

The toll such a role can take is also revealed, with 33 per cent saying they have poor or very poor mental health, and 24 per cent also living with poor physical health. Thirty-six per cent themselves have a disability. 

Despite the provisions of the 2014 Care Act, while 51 per cent have had a carer’s assessment, one in three have not had a support plan – showing the gap in support provision. Only 29 per cent of carers said they could access support when they needed it. 

Carers who were given a support plan described the support offered as “limited”, “inflexible” and “inappropriate”, with their caring responsibilities often meaning that it would not be possible for them to leave the house to take part in an activity with other carers because of a lack of any respite options.

“Carers are invisible to most of the authorities,” said one carer. 

“It would be nice, if you are known as a caregiver, to sometimes be asked ‘How are you? Can we do anything to make life easier for you? 

“It would be great to be valued enough to be cared for too.”

Caring roles most commonly included supporting people with dementia in accessing social opportunities, managing finances and medication, shopping, attending medical appointments, and managing continence and personal hygiene. 

More support is urgently needed to support those who carry out such a vital role, says Frances Lawrence, CEO of Dementia Carers Count. 

“Dementia carers are in desperate need of emotional and practical support to help them cope with the complexities of caring for someone living with dementia,” said Frances. 

“However, carers have told us that they feel ‘invisible’ to health and social care services and like they ‘don’t matter’. 

“Only a quarter of dementia carers say that they have been able to access support when they have needed it and almost half have struggled to get advice from their local authority about how to pay for and organise any support.”

Through their roles as carers, this places huge pressure on them as individuals and their own opportunities to maintain other relationships, including friendships. 

Dementia carers talk about how their world shrinks, how friends disappear and how a lack of social interaction makes them feel isolated and alone. Some carers experience being isolated within their community or extended family due to the stigma attached to dementia.

“There is a clear and urgent need for a much more proactive approach to identifying people who are providing care for someone with dementia and for health and social care professionals to actively keep in touch with identified carers,” said Frances. 

“A dementia diagnosis should prompt the start of care and support for those involved in the care of the person with the diagnosis, with a Carer’s Assessment connecting carers to relevant advice, information and ongoing tailored support. 

“Sadly, there is instead all too often a total absence of any further contact or outreach either after a diagnosis or after a Carer’s Assessment. This has to change.

“Carers are doing so much, they don’t have the time or the energy to contact others for help. However, this doesn’t mean that they should remain ‘invisible’. Far from it. 

“It should be incumbent on local authorities, working in partnership with primary care, to register and keep in touch with dementia carers on a regular basis in order to understand their changing needs and to offer appropriate support to prevent carers from reaching crisis points.”

HIWIN

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