Young onset dementia (YOD) is defined as dementia occurring before age 65, and persons with YOD experience many unique challenges (Barca, Thorsen, Engedal, Haugen, & Johannessen, 2014; Hunt, 2011; Hutchinson, Roberts, Roach, & Kurrle, 2018). Persons with YOD will often be in a different phase of life compared to older adults with dementia; for example, they may still have dependent children, be in full-time employment, and have financial responsibilities (Johannessen, Helvik, Engedal, & Thorsen, 2017; Sikes & Hall, 2018a). The nature of the condition means that people living with YOD will experience an increasing number of cognitive, neurological, and psychosocial changes (Roach, 2017; Sikes & Hall, 2018b). Depression and increased dependence can adversely impact quality of life for persons with YOD (Millenaar et al., 2017; Roach & Drummond, 2014). Changes to social commitments and family role fulfilment may impact self-esteem and personhood (Roach & Drummond, 2014).
Although this area has seen a growing amount of focus in recent years, there is less knowledge of the experience of family members of people with YOD. The role of caregiving is complex and multi-factorial and it is often the family who becomes increasingly involved as the dementia progresses (Kobiske & Bekhet, 2018). Families experience changes to relationships and family roles (Cabote, Bramble, & McCann, 2015), and altered employment and financial status (Kobiske & Bekhet, 2018).
Caregivers of persons with YOD report greater difficulties in their role compared to persons with late onset dementia (Arai, Matsumoto, Ikeda, & Arai, 2007), in addition to adverse outcomes, such as fatigue, caregiver burden, and reduced caregiver well-being (Cabote et al., 2015; Kobiske & Bekhet, 2018). Children and young adults with a parent with YOD move beyond normal family connections and report different experiences in terms of expectations, care, and roles (Sikes & Hall, 2018b).
Typically, dementia research and service provision focus primarily on the needs of older adults (Carter, Oyebode, & Koopmans, 2018) and although dementia has received greater public recognition in recent years, there is little research that explores the experience of caregiving in relation to YOD (Hoppe, 2018; Wawrziczny et al., 2017). Evidence investigating the needs of caregivers and persons with late onset dementia may not be appropriate for understanding the unique needs of persons with YOD (Kimura, Maffioletti, Santos, Baptista, & Dourado, 2015). For example, the absence of relevant services has been linked to prolonged duration of caregiving and increased isolation of caregivers (Arai et al., 2007; Kaiser & Panegyres, 2007; Kobiske & Bekhet, 2018).
Studies that have investigated experiences of service access for persons with YOD and their families often adopt a qualitative descriptive approach (Hutchinson et al., 2018; Pang & Lee, 2017). Although such approaches are useful in exploring new areas of research, interpretative phenomenological analysis (IPA) allows researchers to investigate lived experience at a deeper level (Matua & Van Der Wal, 2015). Past IPA studies conducted on YOD focused on the perspective of persons with YOD (Clemerson, Walsh, & Isaac, 2014; Rabanal, Chatwin, Walker, O'Sullivan, & Williamson, 2018), yet it is important to capture the perspectives of family members who are actively living in the caregiver role. The aim of the current study was to explore the experience of family caregivers of persons with YOD, and to identify challenges and opportunities in accessing support services.
Semi-structured interviews were conducted with six individuals caring for a person with YOD. IPA is a theoretically informed framework and draws from hermeneutic phenomenology (Clemerson et al., 2014). Within the approach, the researcher commits to a phenomenological requirement to understand the experience of the interviewee and the interpretative aspect; the researcher aims to contextualize this understanding from a psychological perspective (Larkin, Watts, & Clifton, 2006). Although the research participant's unique experience is at the core of this approach, IPA explicitly acknowledges the role of the researcher during data collection and analysis and the two-stage (double hermeneutic) process that occurs (Smith & Osborn, 2007). IPA allows for a detailed exploration into the life of the person (Smith & Osborn, 2007), such as specific social contexts (Johnson, 2016), and understanding of human existence during complex life events (Clemerson et al., 2014). IPA has been used successfully when exploring the experience of persons with dementia (Johnson, 2016), and the experience of caregiving (Williams, Morrison, & Robinson, 2014). Data analysis was conducted using IPA guidelines (Smith, Flowers, & Larkin, 2009).
Sample and Setting
Ethical approval was granted by the relevant institution's Research Ethics Committee. The national Alzheimer Society (ASI) agreed to support recruitment for the current study, and participants were accessed via ASI gatekeepers (staff members). Gatekeepers displayed posters and information leaflets across several sites, inviting family caregivers of persons with YOD to participate. Six family caregivers agreed to take part in the current study, and met the inclusion criteria (i.e., primary caregiver for approximately 12 months). Participants age ranged between 33 and 62 years (mean age = 55 years). Three participants were male and three were female. Four participants were employed and two were not. Different caregiving contexts were featured amongst the sample, including adult children, spouses, and siblings.
Participant information leaflets were supplied prior to interviews, and written consent was obtained from all interviewees. Interviews were tape recorded and transcribed verbatim manually by the first author (C.K.) (Smith et al., 2009). Throughout the interviews, open-ended questions, probes, and time for pause/reflection were used when relevant. Interview duration ranged from 40 minutes to 1 hour and 20 minutes, taking on average 1 hour to complete. All participants were interviewed alone in a setting of their choice (e.g., community center [n = 3], ASI center [n = 1], family home [n = 2]).
As per IPA guidelines, analysis followed a layered inductive approach (Smith et al., 2009). Transcripts were analyzed manually to allow the authors to be immersed in the accounts, and to enhance reflexivity. Analysis began with a comprehensive reading and rereading of transcripts. A detailed commentary on the transcripts, line by line, was recorded in the margins, in accordance with recommendations for early stage coding for IPA (Smith et al., 2009). This process allowed for interpretation across transcripts, and initial notes were used as a guide to analyze subsequent transcripts (Smith & Osborn, 2003).
Transcripts were reviewed for closely related topics and an initial thematic framework was constructed. Themes were discussed and evaluated within the core research team (C.K., P.B.) to sustain rigor and consistent focus (Harper & Thompson, 2011). This process afforded space for reflexive discussion on how themes were interpreted. Analysis continued throughout writing of the findings. Before the construction of final thematic frameworks, data were viewed across levels of conceptualization (Harper & Thompson, 2011). The final thematic structure consisted of one overarching theme and three sub-themes.
The authors aimed to enhance trustworthiness as outlined by Guba (1981; Korstjens & Moser, 2018; Shenton, 2004). Credibility was enhanced by emphasizing the author's independent status of researcher and by developing a rapport from the outset using icebreakers. Transferability was enhanced by offering dense descriptions of participant accounts and by describing the research process in depth. Dependability was optimized by having two researchers (J.G., A.d.R.) independently review the analysis. Confirmability was optimized by maintaining an audit trail (Korstjens & Moser, 2018). Although participants were invited to review transcripts to further enhance confirm-ability (Jones, Norwood, & Bankston, 2019), no participants opted to do so.
The overarching theme evident across accounts was a pervasive sense of uncertainty around care pathways and services for their family member with YOD. The sub-themes underpinning this included: (a) early stage ambiguities, (b) challenging transitions, and (c) navigating service pathways: barriers and opportunities. Participants expressed that personal challenges were often compounded (rather than lessened) by unclear service care pathways, from diagnosis and throughout the trajectory.
Early Stage Ambiguities
“Those early years are horrendous.” For most, the early years before formal diagnosis of YOD were marked with uncertainty for caregivers. Many caregivers were unsure of what was causing early changes and described long delays before dementia was named.
Delayed Diagnosis and Misdiagnosis. One caregiver, a son (age 31), described his experience during the early years:
The first few years were extremely difficult. I went to every consultant in the hospital and everywhere and they couldn't pin down what was wrong with her.
Accounts of Misdiagnosis. The early time of being in the dark added a layer of emotional complexity to what caregivers went through. Understandably, there was a sense that health care professionals were reluctant to confirm diagnosis of YOD. Owing to the ambiguity when trying to obtain a clear diagnosis, one interviewee described how she began to doubt herself:
The doctors are very, very reluctant to make a diagnosis in younger people... It literally took years…I used to come away thinking then there's something wrong with me.
This experience of feeling that no one else understood the continual challenges emerged prominently. In many of these instances, the primary caregiver was navigating these services and processes alone:
…You have to remember nobody really understands what it is like…no wonder depression is a big part of it.
Furthermore, there was a sense of frustration at failed attempts to seek clarity. Memory loss was often attributed to a misdiagnosis (i.e., mental illness), which resulted in further uncertainty. In one instance, an interviewee received a call from a hospital about her brother:
I got a phone call...from a psychiatric ward...they had just admitted him and said he had a “breakdown.”
The above account further illuminates the frustration aimed at the lack of clear pathways to diagnosis for persons with YOD. As their family member's dementia progressed, valuable time and opportunity were believed to be missed.
Although diagnosis was actively sought by many of the interviewees, once received, it triggered an emotional response. Diagnosis brought some clarity, but further changes and significant uncertainty followed. In some cases, caregivers spoke of changes to work circumstances, which provoked legitimate concerns regarding their future for their family, career, and retirement. Participants who spoke of this reported feeling emotionally overwhelmed. Significant adjustments and transitions would have to take place, which was a salient theme in participants' accounts.
“You realize that the life you had doesn't exist.” Once a diagnosis of YOD was confirmed, family members had to adjust their lives, for which they felt unprepared. Interviewees described how they had to undergo a process of adaptation, often unsupported. A husband shared his memory of the emotional upheaval of his wife receiving the diagnosis and having to begin preparing for a different future:
When it was first...mentioned to me that it was dementia...it was a shock. I didn't know how to handle the situation…. It frightened me as to...how I could see myself caring for her.
In the above quote, the reality of becoming a caregiver was one this participant immediately found confronting (i.e., challenging) as well as overwhelming due to the changed future. For most participants, the confirmation of diagnosis acted as a catalyst for the acknowledgement of change. Participants needed to take stock, reassess, and transition to a new future. Plans were put on hold, and caregivers felt a sense of loss as circumstances changed:
Lots of places we used [to] go together and people we'd meet…I'm slow enough now to do these things because I feel… on your own…I'd intended to retire at 60...we were going to spend 6 months traveling the world.
For participants, dementia significantly impacted how they viewed themselves and their relationships, and how they experienced day to day living. A common feeling among caregivers was overarching uncertainty as they reviewed and adjusted their anticipated future, such as provisions for financial security and the likelihood of increasing care responsibilities. All of this occurred in the context of minimal formal support:
It was unbelievably difficult…keeping things afloat, you're doing your own full-time job and hoping that you can keep what you're doing together and still trying to figure out the illness.
Caregiving early in a marriage or family life saw interviewees taking up roles they were unprepared for. Another interviewee cared for a younger brother with YOD, and this caregiving role was separate and occasionally led to tension with her role as wife and mother:
It [caregiving role] did affect me greatly...my marriage did suffer...my children as well.
The social lives of caregivers were significantly changed by a YOD diagnosis. To some, caring for their family member or taking on new roles meant reduced opportunities for their own social life. It was noted that lack of specific post-diagnostic services for persons with YOD often caused family members to assume significant caregiver roles quickly. This new role was characterized by stress and uncertainty.
There's a lot of hidden work that goes on…the government…it's not flagged... if you're at home, someone's looking after you so it's fine….
Maintaining hobbies and relationships with friends became difficult. In some cases, interactions with others were often restricted to the home environment. These changes were underpinned by feelings of reluctance and sadness about their new role:
I can't even meet a friend for a cup of tea...I can't even have a conversation and a laugh.
The experience of change and transitions for caregivers were particularly emotive when children were discussed. Interviewees shared accounts of challenging home contexts involving young family members. A spousal caregiver shared his family's experience, which provides an indication of how families navigate many changes and uncertainties that YOD brings:
Our son had been dealing with it for a while without realizing what it was, because (his mother) would have gone (to school) to collect him, and not turned up….
The psychological impact on children was evident across accounts. Children were understandably impacted by the situation and it was difficult for them to understand and accept these changes:
The girls…were at an age where it is important…to have their father…my youngest daughter…found it very difficult to accept…she would just confront him at every turn.
For some, caring for their family member or taking on extra roles, created tensions within family units. Caregivers acknowledged divided loyalties, and guilt, if the role of caregiver ever detracted from the role of parent:
It affected the children in different ways…. The girls lost out…she lost out having her mother with her (when getting married).
Interviewees also shared how YOD diagnosis and the transition to the caregiver role changed the relationship between them and their spouse. Some interviewees described how they no longer perceived themselves as being part of a couple. This changed the dynamic within the relationship from husband and wife to caregiver and care recipient:
Your quality of life is completely finished…you realize that the life you had doesn't exist…you're no longer a couple.
Although interviewees did not often engage in conversation about the positive aspects of their role, one interviewee shared insight to profound moments of mutuality and understanding during significant transitions. In this instance, the person with YOD recognized the many changes his spouse was facing, and the difficulty in transitioning from spouse to caregiver:
(He) would have moments where he would say, “I know. I know how tough it is.”
Overall, feelings of sadness were attached to many transitions caregivers faced. Lack of support prevailed in reference to the experiences of children and caregivers. In the quote below, an interviewee describes her experience:
You are very much on your own… you are totally on your own
Navigating Service Pathways: Barriers and Opportunities
“The ability to just talk about it…that's a big thing.” Caregivers described the services they and their family engaged with over the years and how they navigated through the process. Interviewees identified uncertainty about how to access relevant services, supports, and entitlements. Certain services, due to age-related criteria, did not accept persons younger than age 65, thus prompting caregivers to voice their frustration in trying to ascertain which services they were eligible to access as stated below:
You can't say “Sorry, I know you're suffering but we can't deal with you until you're 65.” I don't think there should be any age bar, it's a discrimination by regulation…. There seems to be no social dimension to what they're doing.
When support/services were used, they had contradictory effects. Accessing mainstream dementia services—which were usually attended by an older demographic—became a source of extra strain for caregivers, rather than a place where they were supported. Caregivers reported that their family member(s) did not fit in to traditional dementia services, such as day care, or did not wish to engage at all. The following statement illustrates how lack of dedicated models of care affected the person with YOD, and how it has a residual impact on the caregiver:
He wanted companionship...it was extremely difficult...(he) liked the idea of someone his own age to be with him... talk to him...he did specify that he was uneasy if he was with older people all the time.
The experience of integrating into an older person's service was distressing for the person with YOD. Awareness of this distress added to caregivers' overall emotional burden. Furthermore, because of work and family commitments, caregivers were less likely to join available dementia support services because of how they were organized. Typical day centers offer only short daily respite, a time frame not accessible to caregivers who work during the day or have other family commitments:
...Just dismissed…they don't belong anywhere, you know? It's really up to the family….
This issue emerged from a common thread among participants' accounts, that services were not equipped to respond to the unique needs of YOD. Because of rigid service arrangements, responsibility fell to the family to provide necessary support.
Other caregivers were keen to engage in services in a timely way, for some, as soon as possible. They discussed some pragmatic suggestions for post-diagnostic models of care:
It's tough enough doing what you have to do, without dealing with… bureaucracy…[which] takes up eighty percent of your time. A good coordinator [would] get things going, knowing that there is a system in place that will make the transition from each stage easier....
The Need for Clarity Endured Across Accounts. Interviewees believed that clearer pathways and timely referrals would help facilitate service access and reduce the uncertainty and burden associated with service navigation:
You could get a lot of things up and running in a very short space of time and the shorter the better…that's the critical thing.
Interviewees addressed how current services could be modified to be more inclusive and flexible (e.g., a day care with dedicated sessions for persons with YOD, extended evening/weekend services for working families). Other examples included a social support model in the community:
He was on his own at the onset… he didn't have a group of people his age group that he could go and sit and talk to that were in the same position…If there was some place he could go…
Interviewees advocated for caregiver-specific supports, such as availability of psychosocial interventions, support groups, social clubs, or informal meetings for information sharing. It was suggested that such supports would help reduce the isolation associated with being a family caregiver:
The ability to just talk about it… that's a big thing.
Interviewees believed that meeting people who are going through something similar was validating and provided an opportunity to seek information and support. There was an acknowledgement that a shared understanding was achievable, and that this connectivity would help with navigating the many changes associated with the emerging caregiver role:
The big…thing that personally affected me more than anything was the uncertainty…[of the future]…the only thing that has made me feel a bit better is [not] worrying about the future.
The current study aimed to provide insight into family members' experience of caregiving for persons with YOD and to identify barriers and opportunities. Findings portray a complexity of experience, underpinned by uncertainty across the trajectory from prior to diagnosis and onward. These findings reflect much of the current literature, which has identified disruption across many areas of life, such as changes in family dynamics and roles, financial and employment related changes, and stress experienced by family caregivers (Gelman & Rhames, 2018a,b; Hoppe, 2018; Hunt, 2011; Kobiske & Bekhet, 2018; Roach, Drummond, & Keady, 2016; Sikes & Hall, 2017, 2018a).
A key issue for family caregivers was the uncertainty of diagnosis, with some families waiting several years for clarity. Previous studies have reported length of time to diagnosis, with some attributing delays to a misdiagnosis of mental illness (Draper et al., 2016). However, these studies link misdiagnosis with depression. The current study found that YOD may be misdiagnosed as other mental illnesses, further complicating the road to a timely diagnosis. Furthermore, interviewees reported that health care professionals were often reluctant to confirm diagnosis of YOD. Although the extant literature has focused on the uncertainty of family caregivers in relation to diagnosis (Roach et al., 2016), little is known about health care professionals' attitudes toward diagnosing YOD.
The unanticipated nature of the illness featured strongly and prevailed across all accounts. Interviewees underwent significant transitions, and for many of them this was compounded by the unexpectedness of diagnosis. This is in line with other studies on caregiving and YOD, where profound and untimely changes to roles, relationships, and family structure are described (Cabote et al., 2015; Johannessen et al., 2017). In the current study, caregivers expressed difficulty accepting the new reality of life as a dementia caregiver, and sadness at significant family changes.
Models of care were deemed not relevant to persons with YOD and their stages of life; this is consistent with previous literature exploring service models for persons with YOD (Carter et al., 2018; Cations et al., 2017; Mayrhofer, Mathie, McKeown, Bunn, & Goodman, 2017; Millenaar et al., 2017; Rayment & Kuruvilla, 2015; Roach, 2017; Roach et al., 2016; Rodda & Carter, 2016). The current study found that services were not just mismatched for persons with YOD, but also for caregivers, who were often also negotiating manifold complexities such as full-time employment and other caring commitments. Although the existing literature highlights the many barriers faced by persons with YOD (Cations et al., 2017; Mayrhofer et al., 2017), often the needs of family caregivers are not considered. It was evident that caregivers in the current study felt let down by services that were not relevant to them or appropriate for their needs. This lack of services has implications for dementia services and health care; services should be relevant, equitable, and accessible. Furthermore, findings suggest that parent and sibling caregivers believed their loyalties were divided between their role as a caregiver and family member, with the needs of others in the family overlooked. Because persons with YOD often have dependent children, further qualitative research from the perspective of children and families is warranted.
These accounts reflect elements of the literature on ambiguous loss (Boss, 1999), which describes the loss that can occur when a family member remains physically present, but because of the dementia process, the caregiver experiences reduced connection and support from the person with dementia over time (Boss, 1999; Large & Slinger, 2015). Previous research has reported transitions from spouse to caregiver, and how this altered dynamic impacts couples' relationships and their relationships with friends (Johannessen et al., 2017). Other research has focused on the transition from child to caregiver (Gelman & Rhames, 2018a). The current study adds to such findings; here, loss was experienced in other ways, with participants reporting a reduction in social networks (e.g., social life, friends, hobbies) and sacrificing relationships due to other emerging commitments. Caregivers are facing significant changes and feelings of uncertainty, only now, it is without the support of their partner or family member. Here, ambiguous loss extends beyond typical changes reported in dementia. Findings suggest that one of the most challenging issues associated with caregiving was the unexpected interruptions to family life and loss of partnership—a cherished source of support.
Parallel to ambiguous loss is the concept of anticipatory grief, a complex concept with grief experienced in anticipation of future loss of a loved one (Holley & Mast, 2009). After diagnosis, or at intervals along the trajectory, caregivers may begin to anticipate the many changes and decisions dementia will incur (Large & Slinger, 2015). The time, energy, and resources that are required of caregivers means that important aspects such as acknowledging their own grief are overlooked (Large & Slinger, 2015). This was evident throughout the current study as concern for the future was experienced alongside significant day to day changes. The experience manifested in various ways, but for all interviewees, it brought a time of immense life changes and a reorganization of the self; new roles evolved as changes occurred. Their careers and working life saw dramatic changes. Caregivers expressed grief at plans that were no longer a possibility.
It could be suggested that the findings aid in understanding anticipatory grief and ambiguous loss, and how these processes occur for caregivers of persons with YOD. These concepts have been underexplored within the dementia caregiving literature, and even less in younger caregivers (Sikes & Hall, 2017). Arguably, there is merit in acknowledging the negative connotations synonymous with loss and grief. Findings displayed evidence (although only a minor thread) of caregivers finding positivity and meaning in their new role, similar to what Large and Slinger (2015) describe as the ability to strive through the role of caregiving, focus on remaining connections, and accentuate the positive aspects of the relationship. Findings hold key messages for health care providers who can identify models of care that will facilitate/optimize the positive experiences of caregiving. The provision of timely and inclusive services for people with YOD and their caregivers mean they are encouraged to continue valued aspects of their life while caring for their family member.
Dedicated resources and equitable access to entitlements are needed to allow family caregivers to better cope with and engage in life outside of caregiving (Cabote et al., 2015). Many countries, such as Norway, Sweden, and Germany, have introduced national dementia strategies. However, these documents often do not make explicit provisions for persons with YOD. It is important to acknowledge that there will likely be many direct and indirect benefits and developments from such strategic focus over the coming years. For example, the Irish National Dementia Strategy (Department of Health, 2014) is working toward an increased emphasis on timely diagnosis and interventions, and a focus on integrated services and supports. Findings presented in the current study are timely in informing such key actions in relation to persons with YOD and their family caregivers.
Strengths and Limitations
Although it is important that the perspectives of persons with YOD be considered, only caregiver perspectives were reported in the current study. A potential limitation is the sample size (N = 6); however, considering the unique experiences of populations under exploration, the authors believe this work aims to capture the experiences of a distinct group rather than make general claims (Smith & Osborn, 2007). Data gathered from interviews with family caregivers included several different family role contexts (e.g., son, sister, husband). The current research extends awareness on YOD as it is experienced by family caregivers from a variety of experiences. Furthermore, the researchers followed IPA guidelines (Smith et al., 2009), which helped optimize structure and rigor.
The current study adds to the existing literature on YOD by highlighting some of the key challenges faced by caregivers. Diagnosis in YOD is problematic, with caregivers voicing delays and a struggle to obtain a timely diagnosis. Following diagnosis, caregivers tried to navigate services and entitlements, often without direction. Service models were not responsive to their unique needs, and in some circumstances, not accessible due to age. The current study occurred during a time where caregivers underwent significant changes in their lives, relationships, and futures.
Services should aim to facilitate timely diagnosis and relevant, accessible post-diagnosis models of care for persons with YOD. Health care professionals should ensure they are aware of specific care pathways for dementia and YOD in their area. This knowledge would help address uncertainty and ensure caregivers are informed and signposted to community interventions and resources. Findings presented here are timely in informing such key actions in relation to persons with YOD and their family caregivers. In addition to support for persons with dementia, caregivers should be offered psychosocial supports to assist them in adapting to their new role as caregiver. Health care professionals, particularly mental health nurses, are ideally placed to enact psychological support and education for caregivers and families in the community. Dedicated community-based models such as caregiver peer groups, information and awareness programs, and community support models (Dinkins, 2019) should be considered.
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