‘This is Killing me Inside’: The Impact of Having a Parent with Young-Onset Dementia

Introduction

It is estimated that there are 42,235 individuals in the UK living with a young-onset dementia (YOD; Alzheimer’s Society 2014). YOD is defined as dementia diagnosed before age 65. YOD has greater heterogeneity than dementia in individuals over 65, where the Alzheimer’s type predominates (62%; Alzheimer’s Society, 2014). The needs of people with YOD also differ both as a consequence of faster disease progression and socially as a result of being at a different life stage (Brown et al., 2012). Individuals may still be in employment, raising families and have financial commitments (e.g. mortgages). As dementia is perceived as a disease of old age, the impact on young-onset families may also be greater as it is ‘out of sync’ with the normal life course (Harvey, Skelton-Robinson, & Rosser, 2003).

Spouses and partners of those with YOD report higher burden, poorer emotional health and less social support than those providing informal care to older individuals with dementia (Arai, Matsumoto, Ikeda, & Aria, 2007; Freyne, Kidd, Coen, & Lawlor, 1999; Luscombe, Brodaty, & Freeth, 1998; van Vliet, de Vugt, Bakker, Koopmans, & Verhey, 2010). Spousal and partner distress in caregiving for someone with YOD may also impact on other members of the family, as individuals struggle to juggle the competing demands of caregiving for an ill spouse and raising a family (Gelman & Greer, 2011).

Adolescence and emerging adulthood is a stage in life where autonomy is sought, romantic relationships formed and aspirations followed. However, a parental diagnosis of YOD may complicate these aspects of development. Recently, a number of predominantly qualitative cross-sectional studies have been published investigating the impact of having a parent with a YOD diagnosis (Allen, Oyebode, & Allen, 2009; Barca, Thorsen, Engedal, Haugen, & Johannessen, 2014; Gelman & Greer, 2011; Millenaar et al., 2013; Nichols et al., 2013; Svanberg, Spector, & Stott, 2010; Svanberg, Stott, & Spector, 2010; van Vliet et al., 2010). Three studies have specifically considered the experiences of individuals aged under 18 years of age (Gelman & Greer, 2011; Nichols et al., 2013; Svanberg, Stott, et al., 2010), and three other studies have considered the experiences of adolescents and young adults (Allen et al., 2009; Barca et al., 2014; Millenaar et al., 2013). Despite wide age ranges in participants, similar themes have been reported across the studies suggesting that a parental diagnosis of YOD places significant stress upon children.

Svanberg, Stott, et al. (2010) in a mixed-method study of 11–18 year olds caregiving for a parent with YOD found that over 30% of their sample experienced clinically significant levels of low mood, and 50% were experiencing significant burden. This is related to children and young adults experiencing ‘anticipatory grief’ where struggles are observed with the decline of the parental relationship, and the sense of who their parent was, even though their parent is still alive (Allen et al., 2009; Barca et al., 2014, Gelman & Greer, 2011; Millenaar et al., 2013; Nichols et al., 2013; Svanberg, Stott, et al., 2010).

Role conflicts wherein children and young people take on roles and responsibilities which conflict with their age and stage of development (Allen et al., 2009; Barca et al., 2014; Millenaar et al., 2013; Nichols et al., 2013, Svanberg, Stott et al., 2010), concern for the well-being of the non-affected parent (Allen et al., 2009; Millenaar et al., 2013; Nichols et al., 2013), levels of family conflict within the home due to behavioural changes in the parent with YOD (Allen et al., 2009; Barca et al., 2014; Millenaar et al., 2013) and the ability of the non-affected parent to manage this (Barca et al., 2014) have also been reported as leading to stress and distress. Children and young people may experience isolation as they struggle to find an outlet for their concerns both in and outside of the family (Allen et al., 2009; Barca et al. 2014; Gelman & Greer, 2011; Millenaar et al., 2013; Nichols et al., 2013).

Until now, research has focused upon identifying themes of shared experience in this population. To date, no published study has explored the subjective lived experience of having a parent with YOD. This is important as although individuals may be experiencing the same situation, their perceptions, experiences and processing can potentially vary considerably. This study addresses this by using interpretative phenomenological analysis (IPA; Smith & Osborn, 2003), a qualitative method which aims to capture lived experiences and the meaning of such experiences to the individual.

By using IPA methodology, this study aims to explore the personal meaning attached to having a parent with YOD; to consider how this impacts on relationships with other family members; and to consider positive as well as negative impact of having a parent diagnosed with YOD. The findings may be considered in relation to establishing the needs of this population and what interventions and services may best meet these.

Method

Participants

Participants were recruited by healthcare professionals (HCPs) working within dementia services in a demographically rural area of the UK (population c.680000). Participants were aged 18 years of age or above with a parent with a diagnosis of dementia confirmed before the age of 65, who were between 6 months and 5 years of diagnosis and still alive. Participants needed to be aware of their parent’s diagnosis and be fluent in English.

Five participants aged between 23 and 36 years were recruited (two men and three women).

All participants had daily contact with their parent whether in person or by phone. One participant was the main caregiver for her parent with YOD and two of the participants had children of their own. Parents were aged between 51 and 63 years of age at the time of diagnosis and were between 1 and 5 years from diagnosis. Alzheimer’s disease was the main type of YOD within this sample. Further patient characteristics are presented in Table 1. Pseudonyms are used to protect participants’ identity.

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Table 1.

Background participant information.

Pseudonym	Age at time of interview	Age at time of parent’s diagnosis	Parent with young-onset dementia	Age of parent at time of diagnosis	Time since diagnosis a	Type of young-onset dementia	Family demographics
Kate	27	25	Father	53	1 year 5 months	Frontal lobe dementia	Only child, parents divorced, lives alone Father in care home, has a partner.
Anne	36	30	Mother	60	5 years	Alzheimer’s disease	One brother living abroad. Lives in mother’s house with mother, partner and young baby. Primary carer for her mother with assistance from carers.
Diana	35	33	Mother	63	1 year	Alzheimer’s disease	Lives with partner and young baby and daughter aged 4. Parents live 3 miles away. Brother nearby.
Ben	36	35	Father	63	2 years	Frontal lobe dementia	Lives next door to parents, brother nearby, sister has moved away.
Matthew	23	21	Stepfather	51	1 year 6 months	Alzheimer’s disease	Lives in family home with parents and 3 siblings aged 14, 17 and 24. Been brought up by mother and stepfather since 18 months old.

a

Confirmed by nursing team.

Analysis

In line with the IPA approach (Smith et al., 2009), each transcript was initially read alongside listening to the audio recording of the interview. Transcripts were then read and re-read several times on a case-by-case basis. Line-by-line analysis of each transcript was carried out, and three types of codes were identified: (i) descriptive codes – key words describing content, (ii) linguistic codes – the words employed to describe the experience and (iii) conceptual comments – where data were questioned for meaning to provide an interpretative context. Identification of these codes provided insight into the ways in which participants spoke of and thought about issues. These were used to develop emergent themes which captured the participant’s individual experience. Emergent themes within each transcript were then collated and connections between themes were made. This process was repeated for each transcript. The themes that had arisen in each transcript were compared and the themes were integrated. Super-ordinate and sub-ordinate themes were identified. A summary table of themes with illustrative quotes from participants was then created (see Table 2). Yardley’s (2000; 2008) four principles for validity in qualitative research were attended to throughout the study to ensure that the research was sensitive to context, rigorous, transparent and coherent.

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Table 2.

Interview themes arising from the IPA analysis.

Super-ordinate theme	Sub-ordinate theme	Sub-themes
‘Like I know them, but I don’t know who they are’	‘And they’ve just gone, that’s … that’s the worst part’‘You are sort of treading on eggshells’	Parent not able to fulfil parental role Loss of knowing the parent as they used to know them Parent becoming a shell Relationship quality Pre diagnosis relationship quality Social comparison of peers relationships with their parents Patience Frustration Cognitive inflexibility/set-shifting Unpredictable communication Comprehension/understanding Trying to understand what parent is thinking
‘You just look up to them for all your life and then now they’re looking to you for help’	‘I never thought I’d be doing for her’‘It’s kind of on hold at the moment’‘It’s splitting me’	Impact of role change Adaptation to role change Views on role change Assuming the parent role Parent becoming infantilised Loss of role for parent Maintaining dignity in presence of role change Restrictions on own life Life on hold Being held back Giving up own career Juggling responsibilities Guilt associated with caring role Caregiver burden Coping versus not coping
‘I feel like she can get things off her chest’		Parental caregiver burden Supporting parent Awareness of impact of YoD on healthy parent Powerlessness versus becoming the strong one Pre-existing relationship dynamic
‘You’re never going to understand until you are in my position’		Communication with peers Being understood versus nobody understanding Rejection of empathy Shared experiences Formal support
‘Hang on a minute, this could happen to … to me’	‘It just knocks you about’‘You only live once’	Physical impact of the diagnosis Preconceptions about dementia being challenged Realisation of own potential risk of YOD Future planning Attitude to genetic testing Living in the moment Escaping responsibilities Leading a valued life in spite of own risk Defiance against dementia

Findings

The analysis revealed five overarching themes. They describe participants’ experiences of having a parent with YOD diagnosis. The five themes are:

‘Like I know them but I don’t know who they are’

Theme 1: ‘Like I know them but I don’t know who they are’

This theme addresses relationship changes between participants and their parent with YOD. This comprises two sub-themes: (i) ‘And they’ve just gone, that’s … that’s the worst part’, considers relationship strength, and (ii) ‘You are sort of treading on eggshells’, examines communication within the relationship.

Theme 2: ‘You just look up to them for all your life and then now they’re looking to you for help’

This theme captures participants’ adaptation to role changes since their parent’s diagnosis. There are three sub-themes: (i) ‘I never thought I’d be doing for her’ considers caregiving responsibilities, (ii) ‘It’s kind of on hold at the minute’ relates to participants sacrifices to their own life and (iii) ‘It’s splitting me’ examines responses to caring.

Theme 3: ‘I feel like she can get things off her chest’

This theme considers issues related to concern for the non-affected parent. For three of the participants, this was predominant and was related to awareness of potential caregiver burden and the limits this placed on their non-affected parent’s life. Diana worried about her dad having time for himself, and taking a break from caregiving responsibilities:

But my main concern is my Dad really more than anybody because, as I say, he’s there day in, day out, and okay he goes out a little bit, but then … you know, I worry about him, that I don’t want him to feel that he can’t ask somebody for help, you know. And that’s why I’ve said to him … and he’s sort of said to me ‘Oh no I’ll be fine, I’ll be fine’.

Ben placed his concerns for his mother within the context of long-standing family relationship dynamics. Ben’s concerns for his mother resulted from a recognition that his mother will always be a constant in his father’s life:

I just tend to find myself worrying more about … about Mum. I just … I think that’s the thing, is that I think the lasting … the lasting thing of my existing relationship with Dad is that … I was always closer to Mum, and that now, in this … at this point my main concern is that Mum’s alright and supporting her […] So … I know that Mum will look out for Dad, and I’m … my priority seems to be more well I’ll look out for Mum.

Theme 4: ‘You’re never going to understand until you are in my position’

This theme examines both informal and formal support for participants. Most participants valued being able to talk to others about their situation, but limits in the utility of this were apparent. Ben preferred talking to family members rather than friends as he found that communication with them had become superficial: that he was ‘trotting’ things out, retelling his story but without the emotional involvement:

I find myself talking to them, and then you kind of … I find myself saying the same thing. […]is it … am I really thinking about that or is that … is that just an … that’s just how I’ve decided I feel about it and now that’s just what I say.

Matthew and Ben found it easiest to talk to friends who, although did not have parents with YOD, had relatives with either a neurodegenerative or terminal illness. Ben reported how this was one of the most ‘helpful’ experiences in identifying with the illusion of coping with a parent with a degenerative illness and the reality of it: ‘It kind of just gives you a bit of … perspective on it. And I think that’s the hard, one of the hardest things to get’.

However, Ben reported that what would have helped most would have been to have spoken to others in the same situation:

… it would probably help … help more because, like I say, you might not … necessarily have to go into the real ins and outs of it … you can … you can get a bit of insight into … into how the situation looks from the outside right? Because it’s really difficult when you’re stuck in the middle of it.

Ben acknowledged that the support would be available if he asked, but he felt strongly that the support available for those with a parent with YOD should be formally stated from the outset:

My brother, myself and my sister don’t … have never really had anybody … say ‘actually I’m coming to see … to see you guys, to see how you’re getting on’ or to get … to provide sort of … support in that respect. I … I think that … they would … they would happily do it if we said ‘Oh well actually can I have a …’, you know, ‘… can we talk about it?’, and they’d be more than happy to do it, but I don’t … it’s not actually happened.

Theme 5: ‘Hang on a minute, this could happen to … to me’

This theme looks at how participants’ own lives were affected by their parent’s diagnosis of YOD. It comprises two sub-themes: (i) ‘It just … knocks you about’ addresses the threat of YOD to self and (ii) ‘you only live once’ considers how participants view their future.

Discussion

This study investigated the subjective experiences of having a parent with YOD. Five main themes emerged from the analysis highlighting changes in relationships with the parent living with YOD, shifts in role and responsibilities, concern for the non-affected parent, the need for participants to be supported and the personal impact to self of the parental YOD diagnosis.

The experiences of participants in this present study showed some consistencies with previous published findings (Allen et al., 2009; Barca et al., 2014; Gelman & Greer, 2011; Millenaar et al., 2013; Nichols et al., 2013; Svanberg, Stott et al., 2010). However, this study also highlights important individual differences in the perception of, and response to, their circumstances. It provides unique insights into how young adults process the experience and navigate relationships and role changes, and how they manage the potential risks associated with a YOD diagnosis in terms of their own life stage when they are at an age of having their own family, relationship and career responsibilities.

The relationship between participants and their parent was defined by ‘anticipatory grief’ and presence of an ongoing sense of loss. This had a significant impact on participants and how close they felt to their parent (Allen et al., 2009; Barca et al., 2014; Svanberg, Stott, et al., 2010). The opportunity to review and renew parental relationships facilitated participants coping with the degenerative changes witnessed, but where denied, feelings of guilt, anger and frustration were exacerbated. The stress-process model of caregiving in dementia (Pearlin, Mullan, Semple, & Skaff, 1990) suggests that relational deprivation and loss of closeness within a relationship can have a negative impact on caregivers and family members, with poor relationship quality affecting both emotional and physical well-being.

Participants adapted their own lives in light of their parent’s YOD. This took place in the context of role reversal. Increasing dependency of parents often magnified the ironies of dementia, particularly for those with families of their own. For some, this evoked a sense of their own lives being interrupted and put on hold. This, combined with perceptions of their own life course being ‘out of sync’ with that of their peers, illustrates how YOD impacted on participants’ own life stage development and the social norms associated with being a young adult (Harvey et al., 2003) and how it is likely to differ from offspring of those diagnosed with dementia over the age of 65 (Brown et al., 2012).

Most participants were not responsible for primary caregiving duties. However, distress associated with caregiver burden was prominent and manifested itself in feelings of guilt. There was individual variation in how participants managed this. Where caregiving duties were tangible, participants appeared to employ problem focused coping strategies. However, when participants experienced a lack of mastery or control of the caregiving situation, feelings of hopelessness were experienced. It may therefore be that perception of the caregiving role and ability to manage it, rather than actual level of role, may be the most influential feature in the level of burden experienced by individuals (Pearlin et al., 1990).

In accordance with other studies, concern for the non-affected parent was often the predominant worry (Allen et al., 2009; Barca et al., 2014; Millenaar et al., 2013). By providing space and support for the non-affected parent, participants assumed the role of protector as this was perceived to minimise burden for the non-affected parent. However, this concern could be constrained by existing relationship quality with the non-affected parent (Barca et al., 2014). The triadic relationship involving the child and both parents was strongly influenced by the previous relationship as well as relationship changes.

Participants’ own care needs were many, but central to this was for others to understand, identify and empathise with their situation. Lack of personal experience of YOD acted as a barrier to communication. Participants felt that they were better understood by friends who also had experience of illness within their families. However, the opportunity to meet with others in a similar situation to themselves was deemed invaluable. This adds to the findings of Barca et al. (2014) that participants desired support groups which were personally meaningful to them.

Participants in this present study felt that their own needs were not specifically considered by HCPs. Although HCPs supported the non-affected parent, participants felt that they lacked visibility and a presence in their own lives. Participants wanted HCPs to respond proactively to their needs to help them manage feelings of stress, burden and guilt and to enhance their understanding of YOD. Although recent policy drivers such as the ‘Dementia Triangle’ (Royal College of Nursing, 2013) recommend that the whole family is considered within dementia, in practice focus is on the primary caregiver or partner (Roach, Keady, & Bee, 2012; Svanberg, Spector, et al., 2010; van Vliet et al., 2010).

Participants experienced uncertainty about their own future. Most were able to manage their worry, but at times it overshadowed their lives. Fears over risk were managed by adopting mindful coping strategies which focused upon living in the moment rather than looking ahead and trying to live their lives before the possible onset of any dementia. This potentially helped participants cope with the day to day realities of YOD (Allen et al., 2009). Only one participant had been offered the option of genetic testing. Her reaction to such testing and implications in terms of her own future fertility was similar to findings reported in studies addressing attitudes to pre-symptomatic testing in those at risk from Huntington’s Disease (Duncan et al., 2008; Taylor, 2004; Wahlin, 2007).

Clinical implications

This study has shown how young adults who have a parent with YOD are a population who potentially go unnoticed by HCPs. Current service provision focuses on the primary caregiver and services are designed with that in mind (Roach et al., 2012; Svanberg, Spector, et al., 2010). Given the isolation experienced by participants in this present study, both from services as well as their peer group, it is vital that dementia services take account of the needs of the whole family. Although it may be easier to identify children that are still living in the family home, this should not take away from the impact a parental diagnosis of YOD may have on young adults living away. Young adults have differing needs, due to their specific life stage and personal responsibilities. It is important that HCPs take a full family history and that their availability to other family members is made clear. This should be undertaken in a proactive rather than responsive manner from an early stage.

Young adults with a parent with YOD may benefit from one-to-one support in understanding the diagnosis, disease trajectory and personal implications in terms of potential genetic risk. It is important that HCPs also acknowledge the role played by young adults in supporting their non-affected parent and how they are able to manage their own lives in light of the YOD. Attempts should be made by HCPs to develop support groups for those who have a parent with YOD. This is something participants in this study identified as being valuable (see also Barca et al., 2014). Face-to-face groups or the development of an online forum, may suit this age group.

Conclusions

This study reveals the personal impact of a parental diagnosis of YOD for young adults in terms of relationship changes, impact on own life and threat to self. Participants experienced isolation and stress as a consequence and felt that there needs were often unmet. A spouse or a partner may often be the primary caregiver for the individual living with YOD, but as this study shows this is not always the case. It is vital that HCPS working within dementia services recognise this, and also identify and reach out to all members of the family so that those who have a parent with YOD are not left isolated and uneducated about their parent’s condition. Information provision, psycho-education, providing points of contact and developing an online support network for young adults with a parent living with YOD, may be some ways to reduce this isolation. Online support networks have already been successfully implemented in relation to other illness and conditions such as cancer.