These days, you have to try hard to not come across a daily article or news piece about dementia, and care homes receive a great deal of negative press. The Care Quality Commission recently released a report on the standard of dementia care in care homes and hospitals, across England. It found that in 34% of care homes the physical, mental health, emotional and social needs of people with dementia were met with variable to poor care.
Depression is common in older adults and also among those with dementia. Up to 56% of people in the early stages and up to 61% in the later stages of the disease are reported to have depression. Alongside depression comes loneliness – the main reason for calls to a national helpline dedicated to older people.
Looking at dementia and the state of many care homes, then, one might expect depression to be more of a feature in those living in care homes. But in a study we published in International Psychogeriatrics we found the opposite. Instead, we found that those with severe dementia living in care homes were less depressed than those receiving home care.
We conducted a large interview study of 2,014 carers and family members caring for people with dementia across eight European nations: England, Estonia, Finland, France, Germany, the Netherlands, Spain and Sweden. For this particular focus on depression, we looked at data from 414 people with late-stage dementia and their carers. We considered those with late-stage dementia because this group has been little explored.
We only included those people with dementia who had a family carer either living with them or visiting them at least every fortnight. Most of the carers were wives or husbands, so loneliness, although a common feature of old age and common in 40% of people with dementia in England, Wales and Northern Ireland, should not have influenced these findings.
Home vs residential care
With family carers providing a great deal of unpaid care, it’s no wonder that staying at home for as long as possible is a major aim in government policy guidelines, because it minimises the costs of dementia care. But most people also say they would rather stay in their home – alongside the familiarity of home it is also a significant step, having to think about where you are going to spend your last days. And quality of life should be higher when you stay at home, providing you receive enough care and support.
So how come depression is lower in those people living in care homes? Bearing in mind that our study was wider than just England, it can’t be all attributed to the state of care homes in England. Quality and approach in homes is likely to vary across the eight nations we looked at.
The decision to move into a care home is usually only made when family members begin to find it difficult to cope with caring for their loved one. This mostly happens in the later stages of dementia, where people have severe memory problems, struggle to express their thoughts and generally have no awareness of their problems. Our study looked at people in this late stage as little is known about this advanced stage – because people lack an understanding of their symptoms.
One of the problems in evaluating depression in severe dementia is the difficulty of those with dementia to put their feelings across. So instead we asked family carers (wives, husbands or children) for those living at home, or their formal carers if they lived in a care home, to rate their levels of depression. We didn’t collect any data on official diagnoses of depression.
Formal carers in care homes rated the depression of those in their care to be lower than family carers when living at home. If depression is indeed lower in, costly, care homes, we would need to find ways to improve emotional well-being at home. It is unlikely that governments will actively make a case for a benefit for people entering care – it is by far too expensive.
But maybe depression was lower in care homes because people with dementia have more companionship – companionship with many people their own age, with similar mental and physical needs. After all, engaging in social activities is linked to increased well-being. Music and art are just some examples, but going to your regular pub quiz or looking after your garden equally count.
So why lower?
Not at all discounting that those living at home are statistically more depressed than those living in care homes, there are some other possible explanations. One is that care home staff spend very little time with individual residents and know them less well. Also, if they didn’t know that person before their dementia it might be hard to find deeper meaning in some expressions or behaviours.
On the other hand, family carers do spend much more time with their loved ones. If you look at it this way it is likely that formal carers don’t have the same ability to truly judge the resident’s level of unhappiness and depression. This doesn’t mean depression may actually be higher in care homes, just possibly less easy to detect.
Another thing is the level of burden on family carers. For those of us who have no experience of caring for someone with dementia, imagining that your loved one changes dramatically in his or her behaviour and character is very sad. It is understandable that this, on top of the hours and hours of care with daily activities, can create a huge burden for the family carer. It is possible that family carers, already stressed and potentially exhausted from little personal time, could overrate the level of depression in their loved one.
The next step now is to go back to the drawing board and look at official diagnoses of depression. Could these findings, from carer reports, be replicated, with official ones? It’s what we aim to find out.
This article first appeared on ‘The Conversation’ on 12 December 2014.