Last Updated: February 21, 2024

Beth Britton explores the support available to family members who are caring for a loved one with dementia if they find their caring responsibilities are becoming all-consuming

In October 2022 I wrote about family carer breakdown in a blog entitled ‘When caring responsibilities go beyond your means’. In that blog I talked about signs that caring responsibilities are becoming overwhelming, ‘red flags’ that can indicate imminent carer breakdown, how to admit you’re not coping, and what to do next.

Caring for a loved one with dementia

Carer breakdown is possible amongst all carers, but it is often associated with caring for a loved one with dementia. Research carried out by Dementia Carers Count in 2022 saw dementia carers recounting how they felt ‘alone’, ‘trapped’ and ‘broken’ in a life they had not chosen. One in five dementia carers said they were reaching crisis point on a regular basis.

There are various reasons for this, including the progressive nature of dementia and how a person won’t just experience cognitive problems but will likely go on to develop many other physical and mental health difficulties too. A person may live with dementia for many years – my dad lived with his vascular dementia for 19 years – and a dementia carer will need a lot of support if they are to continue to care (if this is what the carer and the person with dementia want).

Experiences of a dementia carer who had a breakdown

To understand what this can mean for a dementia carer, I often think back to a speech I heard at Dementia Congress in 2013. It was from a lady called Sheila Wainwright who, recounting her husband’s dementia and the impact it had on both of their lives, told of the ‘Sheer daily misery’ of their life, how ‘No one’ answered her questions and that over the years ‘Many people came and went, and came and went’ but there was no continuity of support for her or her husband. Sheila admitted that she was, ‘Planning how to end our lives before a call to the Admiral Nurse Dementia Helpline saved us both.’

Life as a dementia carer in 2023

To understand what support is currently available and where you can turn if you feel like you’re headed for carer breakdown like Sheila, I spoke to Paul Edwards, Director of Clinical Services at Dementia UK, and Sue Hinds, Head of Services at Dementia Carers Count.

Paul: ‘We know that a diagnosis of dementia affects more than just the person living with the condition. Our Admiral Nurses are regularly hearing about the financial pressures and difficulties being caused when services and support groups close, as well as challenges around a lack of follow up care from GPs and health services. Those caring for someone with dementia are finding it hard to seek respite from their role, and this has resulted in an increase in contacts relating to safeguarding and other complex caring issues, with carers feeling they have nowhere else to turn for advice and support.’

Sue: ‘The physical, psychological and financial challenges of caring – as someone’s personality, mood or behaviour changes – can build up and cause a great deal of stress. These challenges are only becoming more acute with the cost of living and services closing, wearing down the resources and wellbeing of carers.’

What can a dementia carer do to look after themselves better?

Sue: ‘Finding ways to gain support and to build resilience is really important. We offer a free course, ‘Taking care of yourself as a carer’ to specifically support dementia carers to look after themselves better. This is crucial for a carer’s wellbeing and their ability to continue caring. As the cabin crew on a flight say: Put your own oxygen mask on first.’

Paul: ‘If you’re caring for someone it’s really important you consider self-care and try to build a circle of support around you. It is well documented that many carers feel it’s their responsibility or duty to look after a loved one, but the role of a carer is a monumental one and requires time, frequent adaptation, and forgiveness. It can often feel overwhelming, and we urge carers to reach out for support as early as possible.

Our Admiral Nurses offer tailored emotional support for carers, and can also help with practical things like Advanced Care Plans and arranging Lasting Power of Attorney to help families work efficiently with healthcare professionals to provide their loved ones with the best possible care and support.’

When is the ‘right’ time to consider professional care services?

Paul: ‘We are often asked whether there is a ‘right’ time to consider additional or residential care, and the truth is that this point varies for everyone. Every family needs different levels of support and there are several factors at play including perceived guilt, a sense of failure and finances. Because each situation is different, it’s key to seek out advice that is tailored to your situation so you can make the best decision for a loved one living with dementia. We have a number of guides and leaflets available on our website to support carers through this process, and our Admiral Nurses can help with finding the best solution for each family.’

Sue: ‘If the person you care for needs to move into a care home, and particularly if you have to make this choice on their behalf if they don’t have mental capacity, this can have deep emotional impact.

We aim to help family carers to feel as prepared and supported as possible during this time through our ‘Transitions into Care’ series. These sessions provide time to connect with other carers as well as professionals in a supportive and protected environment, with an ongoing support group for carers who attend the course.’

More from Dementia UK:

More from Dementia Carers Count:

Further resources

 ‘Thinking about the Future’, a resource from Carers Trust which is part of their No Longer Able to Care Report, has some prompts and planning ideas that all family carers may find useful.