Dementia Myths vs Realities 5/5: The Carer’s Experience: Who Cares?

Myth 5: People with dementia are always ‘loved ones’, and their carers are usually their husbands, wives or adult children.

In this final blog of the series, I would like to challenge our preconceived ideas about who the carer of the person living with a dementia might be, and explore how counselling might be useful to them.

It is true that caring for someone living with a dementia is usually based on love, affection, and endless compassion. In the UK, partners and relatives care for people living with a dementia at home, in vast numbers, and for long periods in their lives. In 2016-17, 30 per cent of caregivers were caring for between five to 10 years, 22 per cent for longer than 10 years. 63.5 per cent of carers interviewed said they had no, or not enough, support. This includes psychological and emotional support that counselling can offer. Carers from BAME communities are even less likely to have access to counselling, and their counsellor is more likely not to be black.

There are an estimated 700,000 carers under the age of 18 in the UK, many of whom are the unrecognised carers of relatives with a dementia. You may be counselling young people. Their issues might be related to an intense caring role at home, which they have normalised because, “this is the way it’s always been”. If not directly caring for someone living with a dementia, they may be looking after siblings so that their parent can continue caregiving.

You might be counselling Jasmine, 15, who juggles schoolwork whilst looking after her 84-year-old grandmother, who has Alzheimer’s Disease. Jasmine doesn’t know where her mother is.

Or you might be counselling Tony, a gay older man, who cares for Greg. Greg, 68, has never ‘come out’ to his family. Tony will not be welcomed into ‘family’ discussions about day to day care, changes in living environment, finances or planning for end of life care (see Sally Knocker’s Safe To Be Me resource for more on supporting older people who are LGBTQ+).

You might be working with Linda and Paul, who care for their daughter, Carol. Carol is 52, lives with her parents, and has Down’s syndrome and now, Alzheimer’s disease (for more on supporting people with complex needs, see bild).

Clients who are caring come for counselling pre or post dementia diagnosis. You might also find yourself working with a carer throughout the move into a care community. This transition can be a relief. But it can also be an extremely stressful and emotional time for a carer. I remember one client, Grace, telling me, “I believed Bill would be better off in the care home. I couldn’t cope. My health had deteriorated. Little did I know that’s when the problems would really begin…” Bill survived three care home moves. Grace barely did.  

For some carer clients, a few sessions or six months may be sufficient. Others return over time, as they adjust to changes in their relationship and their role even after the person with a dementia has died. Sometimes, the client who cares dies first.

So, we really need to broaden our perspective in terms of the diversity of people who are caregivers, and value their unique experiences. How might a therapeutic relationship with you, support their caring role, relationships and lives?

Of equal importance, is acknowledging that not everyone who is looked after is a ‘loved one’.

Sandra, for instance, struggled to accept the caregiving role being thrust upon her. Her reluctance was misinterpreted at the memory clinic as feeling overwhelmed. She was told, “Don’t worry, we can get a home help, day centre, respite care and a carer’s support group”. Sandra felt unheard, helpless, hopeless, angry, trapped.

How do you talk about your mother at a carer’s support group when you really don’t like her, had a terrible relationship before dementia, and don’t want to look after her? Expectations are overwhelming; from one’s immediate family and friends, society in general, and health and social care professions specifically.

During our therapy sessions, Sandra described the years of abuse she had suffered. She was able to express the unmentionable and question the unimaginable: “Could someone else look after her?” The anticipatory grief, as she imagined her future trapped in her mother’s world, had created great anxiety and depression.

Before writing this final blog, I spoke with Dr Sian Wareing-Jones, a fellow counsellor. We agreed that in our combined 45 years of experience, we had witnessed that many carers are looking after people, for whom there is little and sometimes, no love. As Sian put it, “Carers have told me of the guilt they feel when they hear their relative with dementia referred to as their ‘loved one’. In counselling, and indeed in any work alongside carers, we need to consider the language we use very carefully indeed.”

We acknowledged that the term ‘loved one’ was invariably used to mean relative or partner. This is not always the case. Care tasks can be achieved, but often at great, silent cost to the caregiver.

Finally, the Covid-19 pandemic is demanding more of caregivers than ever before. Available community support has been beleaguered by funding cuts and closure. Many services will not be restored. What will this mean for the caregiver providing 24-hour care and engagement with a person with a dementia? Friends have disappeared. Family have their own lives.

To whom will carers talk about the increasing levels of stress and sadness, exhaustion, and loneliness?

A useful resource for carers can be found at Age UK.