Becoming the carer of a person with dementia

What does this word 'carer' mean?

What do we mean by this word 'carer'? A 'carer' is a person who supports and cares for a relative or friend who is living with dementia (or any disability or long-term illness). This is what we mean throughout the SCIE Dementia Gateway when we say 'carer'.

It's worth thinking more about this word 'carer'. While professionals use this word often, for many people, it is not a word that they recognise or use in the course of their day-to-day life. Many carers do not see themselves as a carer, even though they are taking on extra responsibilities and making adjustments in their own life to compensate for the changes in ability and functioning of the person they live with or support. They believe the word does not apply to them – they think it refers to paid care workers.

I never consciously chose the role of carer. Rather I fell into it, almost by accident, starting by helping out as my parents got older, the way in families you do, and then helping some more, and more as their minds became muddled.

Chris Carling, from her book ‘But then something happened’

From the point of view of the person with dementia also, this word 'carer' may raise problems: it implies that the person with dementia has to be 'cared for' and cannot be an independent person in their own right. People with dementia (particularly in the early stages), or other disabilities or long-term illnesses, can resent this implication, just as they don't want to be known as a 'sufferer'.

A range of carers' views

Research about carers and carers' own written accounts tell us a lot about caring from their point of view (see Whitman, 2009; Hirst, 2004). A growing number of carers are writing books or 'blogs' (short pieces of writing, uploaded onto websites, regularly updated) that also give a valuable perspective on what it means to become and to be a carer of a person with dementia. Two good examples are the blogs of Ming Ho and Thomas Whitelaw.

The Healthtalkonline website includes videos of a number of carers sharing their stories on 'becoming a carer': even among this small sample, the carers share a range of views and feelings about becoming a carer.

The caring role can present immense difficulties, for example, we know that carers are more likely than non-carers to experience problems such as depression and anxiety, loss of confidence and self-esteem (Hirst, 2004). Loss, prolonged distress, and the effect of the physical demands of caring – all the more challenging as the carer gets older – take their toll.

But we should not assume that all carers are stressed all the time. There are positive aspects to caring (such as learning new things about yourself and the person you're caring for), and this is an important point to remember.

Choosing or not choosing the caring role

The label 'carer' also seems to imply that the person has willingly chosen this role, whereas what often happens is that people fall into the role without choosing it as such. They start by helping out and end up becoming indispensable. Chris Carling explains this well in her book, But then something happened:

I never consciously chose the role of carer. Rather I fell into it, almost by accident, starting by helping out as my parents got older, the way in families you do, and then helping some more, and more as their minds became muddled. And suddenly, or so it seemed, I was the responsible adult in the family.

Others can find taking on the role of carer difficult and do so reluctantly.

We need to watch that we don't make assumptions about a carer's feelings about being in a caring role.

Caring changes over time

Being a carer is not a fixed role, but changes over time and the course of the illness. The carer's life continues with its own complications and rewards – existing or new health problems unrelated to the stress or physical demands of care giving, work, sharing grand parenting duties, roles within the home, other relationships, leisure interests and so on.

It's important not to see a carer only in terms of their caring role. They have other identities and roles and, even though at times it may feel as though the caring role is all-consuming (particularly in the later stages), these other aspects should be supported to continue as much as possible.

Juggling work and caring responsibilities

Balancing work and caring responsibilities can be difficult, particularly if it's not exactly clear how to describe the difficulties of the person you're caring for – which is often the case in the early stages of dementia. Some carers are glad to go out to work for company and a break from the extra demands at home, but they might find that their earning capacity reduces as they are forced to cut their working hours to part time. They may lose holidays because of having to take time off to attend hospital appointments with their relative or cover for inadequate support services at home.

Some carers may be at the height of their career and not know how best to juggle work and home life. They may feel stressed with the combination of pressure from work and caring.

Young onset dementia and children

Sometimes the person with dementia is in their 40s or 50s and is a parent of teenage or even younger children. Their child or children may have to take on roles that other young people don't have to think about, at a time when they should be studying or carefree. Because one parent is ill, the family may be experiencing practical and financial problems, and the other parent, where there is one, may be under stress and unable to provide as much support to the child as they did before.

In these situations, children face having to cope with the decline of one parent while watching the distress of the other parent – a tremendously painful experience. It is essential, therefore, that services support such families to minimise these negative effects of dementia on their childhood and teenage years. These children may need information in a format they can understand and have a chance to meet other families in similar circumstances for mutual support. Most people with dementia are much older and so a 'young' family can feel particularly isolated, particularly as there are few services set up specifically for their needs. For more on this, go to the section on young onset dementia.

Caring and cultural differences

In some languages there is no word that translates as 'carer' and similarly no word for 'dementia'. The National Black Carers and Carers Workers Network have highlighted that they have been unable to even find a word that translates as 'carer' in Gujarati, Urdu, Punjabi or Bengali (Afiya Trust, 2008).

Dementia researcher Karan Jutlla (2013) also writes about there being no concept of a 'separate caring role' in the Sikh community, based on her research with the Sikh community in Wolverhampton. She says typically women assume caring tasks are part of their role and relationship with the person needing care. She also reports on a broader problem in black and minority ethnic communities: mental health carries with it a stigma and families may feel a need 'to portray an image of wellbeing to those outside the family'. All this may work against families seeking or accepting formal support to help them care for a person with dementia.

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  • What the research says: Working in partnership with carers