Being in Limboland: having a parent with a young onset dementia

Mel Hall and Pat Sikes

Once Mum is not alive anymore, I’ll be able to do what I want but I don’t know, I’m not really planning anything until that happens…It’s just limboland.

(Vivienne, 22)

It sounds really nasty but I’m waiting for my Dad to die…Waiting so I can start. 

(Zoe, 17) 

In some ways most of us can be said to be waiting for our parents to die simply because that is the ‘natural’ order of things: the generations succeed each other. Improved health care has led to increased life expectancy in some parts of the world, and it has come to be reasonable to expect parents to be alive to see their children settled into their adult lives (whatever these may involve in terms of work/careers, establishing their own homes and families, and the sorts of lifestyle choices they make, etc). Whilst we may never feel ready to lose our parents’ presence in our lives we tend to hope that they will not die until they have seen us through, and shared in, key ‘landmark events’, the contemporary rites of passage that are often considered  ‘normal’ for people in our particular culture such as passing the driving test, graduation from university, buying a home, getting married and having children.

For Vivienne and Zoe, who participated in our Alzheimer’s Society funded project, The perceptions and experiences of children and young people who have a parent with dementia, however, life was not working out according to the pattern that young people from their social and cultural background could normally expect to follow. Furthermore, because of what was happening, they didn’t feel that they could make plans for their futures either. Their experience was of having a life that was on hold, of being in a limbo-like state that would only end when their parent died of the young onset dementia (YOD) that they had been diagnosed with.

Dementia is recognised as one of the major global health and social care challenges of present times. It’s the leading cause of death in England and Wales and it affects many families, having significant and far-reaching consequences for the health, wellbeing and life courses of both those with the diagnosis, and for their relatives. Dementia is the umbrella term given to the symptoms of a whole host of terminal diseases that affect the brain. Findings from our own and other people’s research suggests that within the media and in public perception there’s a tendency to understand dementia as being Alzheimer’s disease causing memory loss in older people, but that is only one manifestation. There are many variants of dementia including dementia with Lewy Bodies, vascular dementia, fronto-temporal dementia, and posterior cortical atrophy, each affecting different areas of the brain and having different consequences for physical and cognitive capabilities, personality, behaviour and so on.  Those diagnosed with a form of dementia before the age of 65 are classed as having ‘young onset dementia’ – a label which, in itself, illustrates the condition’s perceived untimeliness, its deviation from ‘the norm’.

Although (with the exception of Korsakoff syndrome), dementia is always terminal, the ways in, and rate at, which the disease progresses, is unpredictable (see https://www.alzheimers.org.uk/about-dementia/types-dementia). There are cumulative changes in personality and in cognitive and physical capabilities which occur at variable rates:  swift declines may be followed by lengthy plateaus, while in other cases, changes can be slow and slight or, alternately, sudden and dramatic. The person diagnosed with dementia continues to be there physically whilst being progressively and profoundly changed in terms of the characteristics that made them uniquely them. This can take a particularly heavy toll on relatives who constantly have to grieve such losses as: receiving emotional support from the person with dementia; no longer being recognised by them; being unable to hold a ‘meaningful’, shared conversation with them; or, in end stages, the apparent lack of any cognisance, capacity or capability. Family members also have to find ways to accommodate the various consequences of these dramatic and significant changes for the relationships – as partner, child, sibling, even parent – they had previously had with the person with YOD. In addition to the reworking of situational personal meanings, there is negotiation to be done with the outside world too – and this can be complicated by the stigma that is often associated with dementia.

Research on the impact of dementia on carers and relatives has tended to focus on the partners and adult children of older people with Alzheimer’s disease. Our study however involved twenty-three, 6 to 31 year olds (the majority being 16 to 24) whose mum or dad had – or had had – a YOD. We uniquely took a narrative, auto/biographical approach that didn’t ask specific questions but rather invited participants to tell their stories of living with a parent with dementia. We spoke with most people two or three times over an eighteen-month period, during which time participants’ parents’ dementia had progressed and, in some cases, proved fatal.

Participants emphasised their belief that the characteristics of YOD which meant that their parent was there bodily, but not verbally, cognitively, or emotionally; the unpredictability of the dementia trajectory, and the current lack of any cure, were suggested as especially hard to bear in this context. A number of people spoke of what they referred to as ‘cancer envy’: parents with cancer are usually able to continue to – among other things – advise, help with educational decisions and financing, rejoice at successes and happy times and commiserate and support when things were bad, and work to resolve the relationship problems and parent child conflicts that are not uncommon in adolescence. As Colin put it:

With something like cancer, there’s a light at the end of the tunnel, there’s a possibility of recovery. With this, there isn’t …..You’re in a waiting room basically….every time you see her, it’s a bit worse

(Colin, 21)

Even when people were not comparing their situation with that of other young people facing the premature loss of their parent through another condition, it was the uncertainty of what was going to happen and how this would impact on their – previously anticipated – experience of their life course that featured prominently in individuals’ stories.

Some felt that they had missed out on their childhood and on the carefree years generally associated with being a middle-class adolescent or young adult in the UK. Thus people described how they had made educational decisions around what to study and where to study it with their parent’s illness in mind. Some had chosen to stay close to home for reasons like Ava’s:

I didn’t want to leave home. I wasn’t comfortable leaving because I wasn’t sure when I visited what stage Mum would be at and how much I would have missed.

(Ava, 22)

Staying close can help minimise the kind of shock Alex alludes to when he commented: Every time I see him [his father] he’s the worst he’s ever been and the best he’ll ever be.

(Alex, 24)

At age 22 having to think about planning your mum’s funeral, as Vivienne was having to do, is not normal in a society where transitions to early adulthood are more usually marked by such events as buying a house, getting married or having children. Claire brought her wedding forward and planned to try to have children earlier than she had anticipated in an attempt to share these important experiences with her mum. Megan however, felt that her caring responsibilities meant having a family didn’t currently feel possible, although she was worried about running out of time. Katherine’s mother had an inheritable form of YOD meaning that she was contemplating genetic testing to explore her own future. Then there were those participants whose parents had died, and who resultantly had inherited money or property. While this might be considered a financial privilege,  some expressed guilt for their ‘good fortune’ and further set them apart from their peers in terms of ‘normal’ life course progression.

At the present time there are very few targeted support services for young people who have a parent with YOD despite the limited evidence suggesting they are likely to experience a greater degree of social, emotional and psychological upset, physical and mental ill health, financial hardship and family break up than do children who are adults when their parents get dementia. There needs to be more awareness – and addressing – of the needs of those whose life course transitions to adulthood do not, for whatever reason, conform to dominant culturally specific assumptions. Acknowledgement of diversity could help to avoid some of the damaging consequences our participants faced.

Funding

The research project underpinning this blog was supported by Alzheimer’s Society grant R138585

Pat Sikes is Professor of Qualitative Inquiry at the University of Sheffield. Over almost 40 years Pat’s research interests have lain in the use and development of narrative auto/biographical approaches, primarily to study aspects of teachers’ lives and careers. The impact of her husband’s young onset dementia on their children and on herself, led to a shift in focus!

Mel Hall is a Senior Lecturer in Childhood & Education Studies at Manchester Metropolitan University. Prior to this, Mel was based at the University of Sheffield where she was the researcher on the project discussed in the blog. Mel’s expertise is in research with children & young people, families and health. For the project, Mel had the privilege of being responsible for travelling up and down the country to conduct somewhere in the region of 68 hours of talking with our research participants.

Read their article published in The Sociological Review here.

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