Supporting carers of people with complex mental health needs

The team developing our ConnectED evidence briefing around supporting carers of people with complex mental health needs included two members of our Service User and Carer Advisory Group.  We wrote this post together.

Introductions

Carina Andrews has been a carer for her mum since she was little. She also cared for her dad for 12 years until his death in 2023. Ed Brooks was a carer for his mother; her dementia and symptoms of existing post-traumatic stress disorder resulting from her experiences as a Polish refugee during World War II worsened after she was hospitalised following a fall.

Both Carina and Ed feel strongly about actively using their own experience and knowledge to inform research and enable positive change. Carina says:

“When I was asked to share my knowledge on this briefing topic, I was so ready! It may have turned into several mini rants, but I always tried to end them with constructive ideas. This process, thanks to the wonderful research team, created what I think is a very powerful briefing. It identified what is helpful and the lack of research and support for carer’s wellbeing.”

Psychoeducation

The briefing identified the value of psychoeducation courses for carers. Carina has experience of attending one of these:

“I learnt so much from the content and was reassured by the others in the group. I remember a tip from another carer: have a paper recycling bin by the front door so that when the post comes through the door you immediately throw junk away. This may seem like a small piece of advice but when you are completely overwhelmed in a role you did not apply to, receive no training for and have no colleagues, things like how to keep on top of the post can be one brick in building a solid foundation.

I have been a carer now for 25 years, and I think what the evidence doesn’t address is the need for long-term support or the importance of having an opportunity to re-attend psychoeducation sessions.” 

Emotional support

Ed has volunteered with a charity supporting families providing care for people living with dementia. He received training in giving emotional support to older adults like himself:

“Older adults who are carers tend to be isolated and unsupported. When I visited them, many seemed emotionally reserved and resigned to their fate. I felt there was a deep sense of grief and loss that was often unspoken, hidden from view, because a lifelong emotional connection and shared memories were becoming lost in the mist of time. I found the moment when I had to end those sessions quite upsetting and difficult.”

Carer’s Assessment

In 2022 Carina felt herself overwhelmed as her parents needed more and more care, so she requested a Carer’s Assessment.

“I knew I needed support. I had cut down my hours at work and was going to the GP regularly due to my own health. I contacted social care saying: ‘I have no idea what to do'. I am still waiting for an Assessment 18 months later. During this time, I have had to leave employment, received a diagnosis relating to my mental health and stress-related physical health conditions and provided my dad end-of-life care at home 90% alone. What I think I needed was to sit down with someone with social care experience, tell them what was happening and gain some of their guidance on what may be helpful.”

Changes Ed and Carina would like to see in future

Carina recommends the Triangle of Care and asks that all adult social care practitioners familiarise themselves with it.

“We are a team. Carers are not trying to be difficult or give you more work. We are actually trying to do the complete opposite: to sustain someone's life to avoid needing your services. It’s just sometimes (a very small percentage of the time when you compare it to the time we give), we need your professional experience and knowledge to be able to fulfill our role.”

When visiting older adults discharged from hospital with the words ‘cognitive Impairment’ on their discharge summary, Ed asks that social care practitioners also look for signs of worry or anxiety in the carer.

“It’s not just a matter of safeguarding the person with dementia. The burden of caring can be all consuming. A carer's identity and self-worth may evaporate, and positive feelings be transformed into anger, guilt or shame. This puts the health and wellbeing of both people at risk.

Carers often feel a continual worry and anxiety that they themselves may become ill or hospitalised. The fear of an emotional bond being severed can feel a nightmare for both a carer and the person they are caring for. Perhaps this worry is even more acute if the carer is themselves an older person. Having the right social care and housing support in place is key to avoiding a crisis if or when a carer is eventually unable to provide care.”

Social care sometimes has to respond to a carer’s request for support by ‘signposting’ to other services. The word has started to irritate Carina.

“I am starting to feel it really means ‘sending away’. While the information being signposted may be what a carer needs, when we are seeking support the last thing we want is more things to do and another 8 weeks on a waiting list before being signposted on again. My advice here is: know who you are signposting to, check their waiting list, send them an email on the carer's behalf and then check in with the carer in a few weeks. Carers put themselves last because they have no other choice; but the danger is we then crash and have to demand more because we have no other choice.”

And finally

Carina and Ed’s experiences point to a gap in terms of what Carina calls ‘a conversation with a real human in real life’. Ed notes there are many organisations that can provide help and advice to carers of people living with dementia, including through helplines and educational or self-help courses. However, he feels that none of these can hope to address the loss of emotional connection or attachment with a loved one that may happen when their mental health deteriorates. For Carina, what has often been missing is an ‘exchange of ideas’ at the point when it is needed, with someone who listens carefully and is a real expert in knowing what services are available and what will help.

Related resource

'Supporting the wellbeing of carers of people with complex mental health needs', this resource also includes reflective questions for practitioners. Read the evidence briefing.