Health and social care support for people with dementia

What are the challenges faced by family and carers?

According to the Dementia Carers Count charity, there are nearly 1 million families caring for someone with dementia in the UK, with numbers expected to grow. This can be challenging, emotional and take a physical toll. Many carers feel isolated and alone. However, family and carers play an essential role in supporting people with dementia to remain in their homes, access services and to receive appropriate care and treatment.

Our findings showed how some family and carers felt there was an over-reliance on them for intervention and advocacy when their loved ones were using health and care services. 

Findings from the Urgent and emergency care survey, for example, described how carers intervened on their loved ones’ behalf to ensure they received food and attention, and that care and treatment was properly explained.

It was essential I was there, I was his voice.

Carers and family members reported through the Adult inpatient survey that it was often they who had to take the lead in the personal care of the person in hospital, often with little support from the medical staff. This regularly left them stressed.

I am my husband’s carer and spent every day for at least 10 hours a day in the hospital. I was refused food and drink on the ward and no account of why I was there was taken. If I had not taken my husband to the bathroom and washed and cleaned him, he would have been in an awful state.

Family members and carers also used our Give feedback on care service to describe having to step in to meet the needs of their loved ones when speaking about an adult social care service, saying that care workers apparently lacked the skill and compassion.

Clients do not have regular hygiene needs met. My father sleeps in his clothes and the family do all of his basic needs. Staff have a poor understanding of dementia and how to meet needs.

The environment of the urgent and emergency care (A&E) department was challenging for carers as well as people with dementia. Carers described in the Urgent and emergency care survey uncomfortable and insufficient seating, or having to stand or sit on the floor as there was nowhere else. The long waits meant they found it difficult to leave to use the bathroom or get a drink, concerned the loved one would wander off or miss being called. 

The room in A&E was next to a fire exit so I was unable to leave her even for the toilet due to her wandering and ripping out her cannula. I didn't eat or drink anything for over 26 hours as I had to remain by her side. I had a stool (no proper chair) to prop on all night while she slept and was freezing cold.

Over time, the pressure of caring for someone with dementia, on top of other commitments can take its toll on family and carers. Learning from Patient Safety Event data records health staff describing situations where carers were reaching a tipping point. 

His mum is the only carer, and she is becoming increasingly overwhelmed with caring for both her son and husband with young age dementia. His mum also has her own mental health issues.

Despite the important role of family members and other unpaid carers in supporting people with dementia, people told us through Give feedback on care that communication between staff, management and family members could be poor. Examples included calls and requests for meetings being ignored, or concerns not being addressed. We discuss this issue more fully in the section in this report on communication.

Mother has dementia and has very limited mobility. I've made several phone calls to managers at the service only to be given the runaround. It's been a few months of hell for myself and my family just to try and make a safe environment for my mother.

Under the Care Act 2014, local authorities have a duty to identify carers. They should also provide information, advice and carers assessments, to ensure that support is given when assessed as needed, including respite or short breaks.

While our local authority assurance work has identified some good initiatives, more could be done to proactively identify and support unpaid carers:

• Carers assessments were available, but the benefit of these assessments was not always clear, which could affect take-up. Carers described them as hard to access and there were digital and language barriers to access.
• The offer and take-up of respite care varied between authorities. Some people reported that respite care was not flexible and didn’t meet their needs.

A Dementia Carers Count survey highlights how over three-quarters of dementia carers, who are looking after a spouse, partner or parent, have no alternative care plan in place for when they can’t care for them – for example, should they need to access care and treatment themselves. The survey also reported that 85% of unpaid carers of people with dementia have reached crisis point, with 52% stating they receive no support at all.

A 2024 Alzheimer's Society survey also showed that only 9% of carers had been able to access dementia-specific respite care.

What helps to make sure family and carers are supported?

Good dementia care ensures that family and carers are listened to and included in all appropriate care discussions – especially when family members are moving into care homes.

For example, when a person with dementia goes into a care home, this can be a crisis point, and families and carers can internalise senses of failure. 

Services that appreciate this, and provide good dementia-aware care, can have a hugely positive impact on carers and families.

Quote from Give feedback on care:

The team have allowed us to be his family again. His wife is able to continue being his wife and his daughters able to be his daughters again, rather than his carers. So, we are able to appreciate and concentrate on the special moments we have left together.

The importance of good communication was reflected in our analysis of outstanding care homes that mainly cared for people with dementia. Inspectors noted that communication between providers, people who use the service and family members was often exceptional, and there were open channels of communication with carers and relatives to gather feedback about the home to improve and enhance the care people received. 

Extract from a CQC inspection report:

A relative commented, ‘In our experience the management is very good. Communication is excellent and when we have needed to highlight any issues, we have been listened to and actions have been taken. These are then regularly reviewed and communicated back to us.

Good dementia care services also recognise the need to provide space for carers to step back from their caring responsibilities and socialise with people with shared experiences. 

From a former care home manager at a focus group with CQC inspectors:

We noticed there were quite a few family members that were really struggling… We set up a small group in a quiet lounge where we would give them afternoon tea once a month. Often the chat was nothing about dementia or their loved ones… went from introductions to actually, what was good on TV last night.

Where services were not able to provide direct support for carers, they signposted them to external support agencies effectively. One example of this was signposting carers to the Dementia Diaries, where carers and people with dementia could engage with others to share their personal experiences and tips.

In our analysis of the initial assessments from our local authority assurance work, we found that the voluntary sector was often used to provide services for unpaid carers. It was noted this relied on funding, charitable donations and people volunteering to be provided consistently. 

Extract from a local authority assessment report:

The voluntary sector was seen as a key partner in helping deliver better outcomes for people, including unpaid carers, which contributed to the range of activities that people told us they accessed.