What makes life worth living?

The stereotypical image of life in care homes is of residents sitting around the walls of a day-room either sleeping or quietly anxious, waiting for something to happen. There is little spontaneous conversation or activity of any kind. Days are dreary and depressing. The TV is on and sometimes the radio too, but no one appears to pay much attention. Many years ago I wrote a review article called ‘Looking at them, looking at me’, which summed up my experience of undertaking observational research in long-term care (Brooker, 1995). I used the title to illustrate that, during this research, the most interesting thing that occurred for residents all day was the fact that I was trying to undertake so-called ‘fly on the wall’ observations. After many years spent working in the field to improve the quality of life in long-term care, I am still disappointed that this stereotype prevails. Unfortunately, it prevails because this is still the reality for many people living in care homes around the world. In my periods of despondency about the situation, I plan a follow-up review called ‘Still looking at them, looking at me’, in which I conclude that care homes are impossible environments for people to enjoy a good quality of life and are, at best, a necessary evil. Then I visit a care home or housing scheme where I see people having a great time, where life (although not perfect) is fun and meaningful, where care staff help residents to forget their troubles and enjoy life in the moment and where families are welcomed and the home truly feels like a home. I have experienced this many times now, but still not as frequently as I would like. We know that care home life does not have to conform to the negative stereotype, but we still have a long way to go before we can be confident that good practice prevails and becomes the norm. What makes a life worth living is a question that all of us involved in providing long-term care need to be acutely aware of. Will there ever come the day when anyone looks forward to moving into a care home? We know this is a major and traumatic life event that the majority of people try to avoid. The real challenge for us is to make sure that, once someone has moved into a care home, we do all within our power to provide them with a life worth living. There are three papers in this issue of Ageing and Mental Health that report on the perspective of care home residents from three different countries. These help us to clarify some of the things care home providers can put in place to make life worth living. It is refreshing to have three studies that have worked hard at listening to what people living in care homes have said themselves about what is important to them and that all three have so carefully analysed what was said. Choi, Ransom and Wyllie interviewed 65 nursing home residents in five Texan nursing homes about the terrible feeling that consumes us when life is not worth living – depression. The interviews focussed on residents’ perceptions of depression and the ways in which they coped with these feelings. Virtually all (59) said that they had experienced feelings of depression relating to entering the care home that had lasted from a couple of months to a year after admission. On interview around half said they currently felt depressed. Some of the quotes from these interviews are heart-breaking. Theme-based content analysis of the transcripts revealed that residents saw feelings of depression being caused by loss of independence, loss of freedom and a dislocation of continuity with their past life. Although all lived in communal facilities, the pervasive feeling was one of isolation and loneliness. The invasion of privacy caused by sharing a bedroom and the indignity of sharing a bathroom (particularly when you need to use it badly and someone is in there) caused a great deal of distress. All residents who were covered by Medicaid had to share a bathroom. Loss of autonomy and control due to institutional regulations was a further cause of depressed feelings. Many felt ready to die and openly talked of this in the interview. Death was a frequent occurrence and many had experienced the death of other residents they had made friends with. All the residents interviewed were cognitively intact and reported being around people with dementia as depressing, although many expressed sympathy towards them. High levels of staff turnover, staff shortages and poorly trained staff exacerbated feelings of depression further. Although there were some organised activities, the majority of residents wanted more opportunities to get out of the home on trips out – even to the shops. ‘I have not been to the grocery store for five years’ was mentioned frequently. With regards to in-house activities, many reported being bored with doing the same things over and over – even when playing bingo it appeared that the same cards always won! The vast majority reported that they coped by placing their trust in God to get them through, being stoical about the sense that things were as they were and trying to maintain a positive attitude. Family visits and support were particularly important for those residents who reported not feeling depressed. In terms of improving coping, most said that they would prefer better activity programmes as a means of helping them