Families caring for dementia patients in UK reaching crisis point, says charity | Dementia

Soaring numbers of families struggling to care for someone with dementia have hit a “crisis point” with nowhere to turn for help when their loved one puts themselves or others at risk of harm, a charity has said.

More than 700,000 people in the UK look after a relative with dementia. Many feel they can no longer cope with alarming situations where they or their relative are at immediate risk of being harmed, according to Dementia UK.

Dementia can affect a person’s ability to manage their reactions to difficult thoughts and feelings. This can lead to them experiencing such intense states of distress that they become verbally or physically aggressive, putting themselves and those around them at risk of harm.

The number of people with dementia is growing rapidly, with someone developing the condition every three minutes in the UK. However, there is still limited information and guidance available to those who care for someone with dementia.

The charity says carers and their loved ones are being failed because health and social care support services are already stretched to their limit, which has led to a surge in calls to its helpline.

Sheridan Coker, the deputy clinical lead at Dementia UK, said: “We’re increasingly being contacted by families who are at risk of harm with no one to turn to. We receive calls where the person with dementia has become so distressed that they have physically assaulted the person caring for them, often a family member.

“The majority of calls come from adult children who don’t live with their parent but are concerned about their behaviour. We also receive calls from spouses who are exhausted from caring for their partner 24/7 and the situation has become critical. Some carers express thoughts of harming the person with dementia because they can no longer cope. These calls are alarming and extremely concerning.

“Families haven’t been equipped with the guidance they need to manage crisis situations and often feel like they have been left to get on and deal with it. This leads to families being put in situations where they are at immediate risk of being harmed.”

Last December one woman contacted Dementia UK’s helpline asking for support after her mother, who had been diagnosed with vascular dementia in 2021, began physically attacking her father.

“I had spent the weekend with my parents and was shocked at how out of control the situation had become,” she recalled. “My dad said that he wanted to cry all the time and that my mum thought he was having an affair whenever he left the house to do the shopping or walk the dogs.

“On top of this, my dad’s frustration with her not remembering things would cause her to get angry. She would hit him, sometimes in the face, and throw her shoes at him, to the extent that it caused physical damage and bruising. It made me feel so sad and desperate for them both. I was exhausted and frustrated and didn’t know what to do or who to turn to.”

Dementia UK’s helpline, which the woman called a “lifeline”, is now getting thousands of calls a month.

Data reviewed by the Guardian shows that the number of calls to Dementia UK’s helpline specifically about safeguarding, where the person with dementia or their carer is in immediate danger, almost doubled in 2022 to 173 – more than three a week – compared with 90 the year before.

There has been a record number so far this year, with the charity taking almost as many safeguarding incident calls (156) in the first four months as it did in the whole of 2022.

The charity is projecting that it will receive nine times more safeguarding calls in 2023 than it did in 2021. It has developed a guide for families that features information, advice and a list of resources when considering personal safety.

Paul Edwards, the director of clinical services at Dementia UK, said: “For far too long, families affected by dementia have continued to be failed because of the impact of local services being stretched to their limit. This has led to an increase in the number of carers contacting our helpline, which is staffed entirely by specialist dementia nurses. They don’t know who or where to turn to in times of need.

“To add to this, carers do not always feel equipped to deal with the impact of experiencing serious and complex issues. To prevent such fragile situations from happening, carefully considered strategies for dementia care must be developed at both national and local levels.

“While our admiral nurses are supporting those family members and showing how the gap between health and social care can be bridged, there are not enough of them to continue to shoulder the burden.”