This meeting focused on supporting couple relationships in older age, a neglected area of social policy and practice which is of great importance not only for improving older people’s social connectedness and well-being but also on account of the impact on wider society of relationship breakdown in older age.
Presentations were given by Marie Claire Shankland (National Advisor for Older People, Improving Access to Psychological Therapies (IAPT)), Sally-Marie Bamford (Assistant Director of Research and Strategy,
International Longevity Centre – UK) and Dr Andrew Balfour (Director of Clinical Services at the Tavistock Centre for Couple Relationships and Head of the “Living Together With Dementia” Programme), followed by a discussion of the issues raised.
Summary of the meeting
Andrew Selous MP, Chair of the APPG, opened the meeting. He observed that while most of the focus in the area of family breakdown is, quite correctly, on children and families it is nevertheless right that we look at what happens in later life. Loneliness is a massive issue in our society, and high levels of family breakdown contribute to high levels of loneliness. Some of the things that older people can give – such as kinship care ( i.e. looking after their own children/parents, or grandhilcren) are always going to be easier to provide from the base of a couple relationships. Policymakers and academics need to understand that we cannot keep on paying the bill for these huge numbers of couples separating in our society; indeed, our public finances show that they are increasingly unable to do this.
Dr Andrew Balfour
Dr Andrew Balfour, TCCR's Director of Clinical Services and Lead for the Living Together with Dementia Service, gave the first presentation. His talk covered the following points:
- The inclusion in the 2010 Coalition Agreement of a commitment to the funding of relationship support and for couples to be given greater encouragement to use existing relationship support was something which the whole relationship support sector welcomed; it was important however that such support was available from cradle to grave.
- There is a tendency to regard those people who may need relationship support in terms of couples in their twenties, thirties or forties, or perhaps couples who are about to have, or have just had, a child. Relationship support is a wider concept and intervention than just these groups however.
- With life expectancy is increasing by 5 hours per day there needs to be a Government-wide plan to include a focus on the older couple. It is increasingly clear that couple relationships are not only important for the mental and physical health and development of children in our society - they are the crucible of our health and wellbeing throughout our lives.
- And yet we don’t offer much help to such couples – hitherto the older couple relationship has been largely invisible at all levels – from policy makers to commissioners, to local service providers and there is a cost to this in emotional and physical suffering and the neglect is costly in financial terms too – as we do not sufficiently target help where relationships, if they could hold together, might provide care and containment which is otherwise very expensive to provide in institutional settings.
- One of the consequences of not doing so is greater loneliness for example. Research shows us that older people living alone, or even with a relative or friend are more likely to be depressed and lonely and unsatisfied with life, than those living with a partner – and men and women living alone have a higher mortality rate than those living with a partner (Grundy and Young 2007).
- Another consequences is greater physical ill-health. Researchers have found strong associations between depressive symptoms (unhappiness, loneliness, restlessness) and ‘functional limitations’ (the physical inability to perform basic tasks of everyday living) – between the partners in couples (Hoppmann, Hibbert & Gerstorf, 2011. Health Psychology). Such findings show how interdependent emotionally and physically older couples are – highlighting the need for a health and social care system that does not just focus on individual patients in isolation
- Without such a focus on the couple relationship in later life we hav a more poorly connected society – research shows that parents’ relationships with their adult children are negatively affected by divorce, which means that older parents get less support. And the loss of relationship with an older parent translates into a reduced availability of kinship care from grandparents – a grandparent you have a difficult relationship with isn’t necessarily one you can call to help lighten the load when you’re looking after small children. Indeed, it is clear that at all stages of life, relationship distress has consequences that reach beyond the couple: particularly affecting children and grandchildren.
- Too often services treat one older person in isolation, with little regard for the impact of this on the couple. This is very true of our approach to people with dementia.
- In dementia, the importance of the couple relationship is thrown into sharp relief. 700 000 people are estimated to have dementia, one in 20 of us after 60 will develop it, and after 80 this rises to one in five.
- Research shows that what might look like small psychological gains in a condition that is progressive and incurable, can nevertheless have very important consequences: studies that show that providing carers with emotional support delays admission to residential care by an average of 500 days, for example (Bodarty, Gresham & Luscombe 1997; Mittelman, Hayley, Clay & Roth 2007).
- Research also shows that loss of intimacy is associated with carer spouse depression, and that low levels of positive interaction between the partners in the marriages of people with dementia predict the move to residential care, and the death of that spouse with dementia two years later.
- And research also shows that closer relationships between carer and the person with dementia are associated with slower decline in Alzheimers' Disease, and this effect is highest for couple relationships.
- We know about the importance of the couple relationship, and yet it is very difficult for services to take the couple into account.
- At the moment there are few tools to help older couples with dementia with the emotional challenges they face, and there is therefore a pressing need to design interventions to support such couples such as a new approach to working with couples where one partner has a dementia that TCCR has been developing with support from Camden Council’s Innovation Fund.
- This intervention is a brief, structured intervention, using everyday activities, delivered in participants’ homes, and using simple new technology: ‘Flip’ cameras, to videotape the partners doing ordinary activities around the house and then playing back selected interchanges to the couple as a way in to addressing dynamics between them – with the aim of increasing shared activity, emotional contact and understanding between the partners - and to counter the tendency towards withdrawal and loss of contact, or the acting out of frustration and anger that can be part of the picture. The aim is to help people with dementia to manage the trauma of the diagnosis, the loss and the changes it brings and to maintain, or recover the protective aspects of the relationship – which the research indicates are to do with emotional contact and understanding, positive interactions, shared activity and involvement and the overall quality of the relationship between the partners. For the relationship to function as a protective factor, and as a resource able to survive and to contain the care needs of the person with dementia, depends upon the resilience of the couple and on interventions that help to support this.
- How society often talks about sex and personal relationships and yet ridicules or stigmatises this aspect of life for older people
- That intimacy through relationships is a basic human need that is intrinsic to an individuals sense of self and wellbeing and sustains throughout the lifecourse (Kuhn 2002). Sexual activity and intimacy is increasingly recognised by academics and health professionals as enhancing quality of life throughout the lifecourse (WHO).
- Regardless of age, individuals require companionship, intimacy and love; however, this is not an aspect of ageing most people are comfortable with, let alone would support.
- Part of this problem why we are uncomfortable about this aspect of ageing comes from how, as a society, we view older people more generally, tending to treat older people as a monolithic entity defined only by their age. This has led to reductive conceptions of older people’s identity based on the themes of ‘burden’, ’dependency’ and ‘vulnerability’. A study in 2004 conducted by TNS for Age Concern revealed a perception among a majority of adults (58% per cent of those aged 16 and over) in Great Britain that newspapers and television portray older people in a predominantly negative way.
- Indeed the popular portrayal of older people as non-sexual beings in fact does not marry with an albeit small but increasing body of evidence that suggests that older people not only enjoy intimate relations but also report higher levels of sexual satisfaction. A survey for the British Medical Journal (2008) found that more couples over 70 are having sex and furthermore deriving greater enjoyment than in previous generations. However there are gender differences in this regard and other recent studies indicate that older women report lower levels of sexual ‘satisfaction’ compared to their male counterparts.
- Invariably the health status of older people will also have profound repercussions for not only their ‘quality of life’ but, by implication, their intimate and sexual relations and yet advanced age and/or for example reduced mobility or cognitive impairment need not or should not be barrier to meaningful transactional exchanges between two individuals later in life.
- Very few care plans address the sexual needs of individual clients, despite the benefits to person-centred care of this aspect of dementia planning (for, as Kuhn suggests, it enhances general health and wellbeing and can reduce the instances of challenging behaviour)
- Dementia, relationships and sexual behaviour remains one of the last taboos of long-term care and has often been ignored and sidelined in policy and practice, yet it a significant issue for the couple, the families and care workers.
- More than 320,000 of the 400,000 people living in care homes in England, Wales and Northern Ireland now have dementia or severe memory problems, the Alzheimer's Society charity estimates.
- Sexuality and intimacy are important to a considerable number of older people in residential care. Many couples may wish to maintain a sexual relationship, experiencing sexual intimacy as a source of comfort, reassurance and mutual support (Bouman, 2007). It may be the case that they have entered the care home as a couple both with dementia, or with dementia affecting only one of them. To the outside world it may seem uncomfortable or odd at first sight for a sexual or intimate relationship to continue when one partner has dementia. However, many couples do wish to maintain some level of intimacy.
- Care homes have a key role to play in supporting pre-existing relationships. For example, through acceptance and acknowledgment that older people with dementia have a need for intimacy, love and sexual expression; and through promoting a culture of acceptance, dignity and privacy for all residents and remembering not all relationships will be heterosexual.
- Erikson described the psychological task of old age as establishing wisdom.
- Most people do achieve some level of pride in their life – indeed, levels of life satisfaction are higher than for adults of younger age, and levels of anxiety and depression are lower than at younger ages.
- We should think of older people as an asset – old age is not without its challenges and many older people do not avoid despair.
- One of these challenges is dementia. And dementia throws up particular challenges in relation to couple relationships. And yet dementia is becoming a more and more common experience in most of our families
- Another challenge relates to the fact that getting older, while not an illness in itself, is associated with a range of long-term conditions. People over 65 make up half of group with CVD/arthristis/LTCs.
- Loneliness is another big issue and correlated with living alone. By 2033 4.8million over 65 will live alone.
- Regarding divorce, in the decade 2001-11, the percentage of divorce in the over 65s doubled. It is likely that this is the second or third divorce and represents a considerable fragmentation in the latter part of life. It is easy for us to become mesmerised by demographic changes – but we should have a psychological and relationship-focused view of these issues – assets within an ageing society.
- Older people benefit from interventions to improve their mental health, just as younger people do. NICE does not differentiate between these two groups. IAPT data since 2008 reveals that older people benefit as much if not more than younger people from IAPT (and older people are more likely to complete the programme). IAPT provides individual but also a small amount of couple interventions – it is important to remember that living with a depressed person in a depressing business – couple interventions therefore can provide benefit for both parties. However, IAPT services have not seeing the numbers of older people coming forward that it had hoped (only 5% of the 500,000 seen in IAPT have been older people. Much more work therefore need to be done to increase the value put on late life relationships.
- Other interventions that are currently being piloted include a project with Alzheimers Soc to deliver cognitive behavioural therapy online aimed at carers of people with dementia. These people represent a particularly vulnerable group who find it very hard to get time away, and who can be anxious about getting help for themselves if it means leaving the person with dementia alone.
- Working on older people’s wellbeing is actually preventative for people developing depression in the longer term. "No health without mental health" (the Government's mental health strategy) has supported psychological interventions for people with long-term conditions. Psychological interventions to improve mental health also have beneficial knock-on effects on physical health.
Sally Marie Bamford
Sally Marie Bamford, Assistant Director of Research and Strategy, International Longevity Centre - UK, gave the second presentation. In this, she explored two main themes. Firstly, why relationships and intimacy/physical relations are important for older people and why as a society we ignore this; secondly, why relationships for older people with dementia are important, even when they move into a care home and the need for society to provide support in relation to this.
Specifically, her talk covered the following areas:
Marie Claire Shankland
Marie Claire Shankland, National Adviser for Older People (Improving Access to Psychological Therapies, IAPT), gave the third presentation. In this presentation, Marie Claire explored the following points:
A wide-ranging discussion then ensued; many of the areas that this discussion touched upon will be explored further in a forthcoming briefing on the subject of supporting couple relationships in older age (due summer 2013).