Journal of Gerontological Nursing

Person-Centered Care 

“I'm Still Here”: Personhood and the Early-Onset Dementia Experience

Sharon L. Moore, PhD, MEd, RN, RPsych; Mariko L. Sakamoto, MN, RN; Steven T. Johnson, PhD

Abstract

Early-onset dementia (EOD) occurs before age 65. The current study examined the lived experience from the point of view of four adults younger than 65 with dementia, particularly how they perceive their personhood. Using interpretative phenomenological analysis as the research approach, findings revealed that the EOD experience can be incorporated into six themes: (a) A Personal Journey, (b) Navigating the System, (c) The Stigma of Dementia, (d) Connecting to the World, (e) A Story Worth Telling, and (f) I'm Still Here. Participants' stories, as presented via these six thematic threads, reveal that individuals with EOD can have a strong sense of personhood. Findings are discussed and situated within the current EOD body of knowledge, and new knowledge is presented. Implications for practice and recommendations for future research are discussed. [Journal of Gerontological Nursing, 43 (5), 12–17.]

Abstract

Early-onset dementia (EOD) occurs before age 65. The current study examined the lived experience from the point of view of four adults younger than 65 with dementia, particularly how they perceive their personhood. Using interpretative phenomenological analysis as the research approach, findings revealed that the EOD experience can be incorporated into six themes: (a) A Personal Journey, (b) Navigating the System, (c) The Stigma of Dementia, (d) Connecting to the World, (e) A Story Worth Telling, and (f) I'm Still Here. Participants' stories, as presented via these six thematic threads, reveal that individuals with EOD can have a strong sense of personhood. Findings are discussed and situated within the current EOD body of knowledge, and new knowledge is presented. Implications for practice and recommendations for future research are discussed. [Journal of Gerontological Nursing, 43 (5), 12–17.]

Early-onset dementia (EOD) has a disease onset before age 65 and includes 2% to 10% of all dementia diagnoses (Alzheimer's Disease International, 2009; Miyoshi, 2009). Although dementia at a younger age is less common than older adult onset, approximately one in every 1,000 individuals can develop EOD (Alzheimer Society Canada, 2016). Existing research shows that younger individuals with dementia face significant stressors compared to older adults with the disease (Roach, Drummond, & Keady, 2016). For example, younger adults with dementia are often still employed at the time of diagnosis and forced retirement at a younger age can cause financial stress and difficulties (Beattie, Daker-White, Gilliard, & Means, 2002). Individuals with EOD may have dependent children at home (Martin, 2009) and are likely to be in better physical health than older adults with dementia (Beattie et al., 2002). Overall, individuals with EOD do not fit the predominant image of an older adult with dementia and can experience a form of reverse ageism (Chaston, 2010). Unfortunately, most dementia services have been designed for older adults and do not meet the specific needs of those with EOD (Flynn & Mulcahy, 2013; Martin, 2009).

Personhood and Dementia

The goal of the current study was to explore the perception of personhood in younger adults with dementia. Kitwood (1997) defines personhood as “a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being” (p. 8). Loss of personhood can occur as a result of the way individuals with dementia are treated by those around them (Bartlett & O'Connor, 2007). Although Kitwood's (1997) definition highlights that others can powerfully influence sense of personhood, this perception is ultimately a subjective understanding. The current study is based on an assumption that to support and provide appropriate services for individuals with EOD, it is necessary to first understand how those with EOD perceive themselves, especially within their context of younger adults experiencing the disease.

Method

Interpretative phenomenological analysis (IPA), a method of inquiry based in phenomenological, hermeneutic, and idiographic traditions, was chosen as the framework for this study. IPA is a qualitative method of research devoted to examining how individuals make sense of their life experiences (Smith, Flowers, & Larkin, 2009). IPA incorporates a two-stage interpretive process known as the double-hermeneutic (Aisbett, 2006), which involves the researcher attempting to make sense of the participant's experience, who is in turn trying to make sense of his/her world and experience (Pringle, Hendry, & McLafferty, 2011). This framework from which to consider the EOD experience seemed fitting when considering the extent of sense-making that must occur in dementia.

Arts-Based Data

An account of an experience can be enriched in additional ways, such as through the use of arts-based strategies for data collection. Arts-based research is increasingly recognized as a method with which understanding of the health and illness experience can be augmented (Boydell, Gladstone, Volpe, Allemang, & Stasiulis, 2012; Coemans, Wang, Leysen, & Hannes, 2015; Hodgins & Boydell, 2014). Thus, participants were given the option to include photographs, drawings, poetry, or music, or any other means as part of the process of relaying their experiences as individuals with EOD. Three participants provided arts-based data—two in the form of music and one with poetry.

Sample

Following ethics approval from the researchers' university, purposive sampling was used to locate participants for the study. Study information was disseminated at several sites, including a local Alzheimer's Society chapter, a tertiary dementia treatment center, as well as public libraries and community centers. Recruitment was challenging and lasted 7 months. Eventually strategies were expanded and participants were recruited via Craigslist®, a Facebook® dementia support website, and snowball sampling. Difficulties in recruiting were attributed to EOD being less common than older-onset dementia. The stigma of having dementia at a younger age likely also made it challenging to find participants. All of the interviews were audiorecorded and transcribed verbatim by a professional transcriptionist.

Initially, five individuals ranging in age from 46 to 62 years were recruited. During the interview process, it became evident that one individual's dementia was too far progressed to allow participation. The remaining four participants were male and in the early stages of dementia (one was diagnosed with Alzheimer's dementia, two with frontal temporal dementia, and one with Lewy body dementia).

Obtaining Consent

Research directly involving vulnerable individuals is often avoided due to the concern that it could be unethical and difficult to undertake (Alexander, 2010). However, those who are vulnerable have a right to be heard (Wilson & Neville, 2009) and not be excluded from any benefits that might be gained from being involved in research (Alexander, 2010). It is important to note that incompetence or lack of capacity in one area does not necessarily indicate lack of competence in another (National Council on Ethics in Human Research, 1996). As such, it should not be presumed that cognitive changes associated with dementia would render those with the disease incapable of research participation and of being able to provide consent. In fact, to assume that an individual is incompetent to consent on the basis of a dementia diagnosis is excluding (DuBois et al., 2012; Heggestad, Nortvedt, & Slettebø, 2012) and can reinforce stereotypes of incapacity (Slaughter, Cole, Jennings, & Reimer, 2007). Thus, when it comes to involving individuals with dementia in research, capacity should be initially presumed (Sherratt, Soteriou, & Evans, 2007). In the current study, all participants were able to consent on their own behalf.

Data Analysis

As part of IPA's idiographic orientation, the entire analytic process focused on one interview transcript at a time (Rassool & Nel, 2012). Effort was made to bracket as many possible ideas and themes that emerged from prior transcript analysis when working on the next one. Although challenging, this was a vital process that allowed for new themes to emerge with each account. The final analytic step involved searching for patterns or overall themes that connected all of the interview transcripts and that could be developed into superordinate themes (Smith et al., 2009). If participants chose to express themselves in an artistic manner, their arts-based offering became the “transcript” from which further analysis took place.

Rigor

Yardley's (2000) four principles for assessing quality of qualitative research (i.e., sensitivity to context, commitment and rigor, transparency and coherence, and impact and importance) were considered when taking into account the credibility of the findings. For example, as part of ensuring commitment and rigor, an e-mail was sent to all participants with a description of each superordinate theme. Three of four participants responded and responses included comments such as, “I agree with your findings” and the findings are “meaningful to me because they're happening to me.” These responses were encouraging and validating in terms of the interpretative worth of the findings. Furthermore, as this was a Master's student project, the thesis advisors were provided with a list of emerging and superordinate themes, and ongoing discussion regarding thematic development occurred. In addition, thoughts and reflections were documented in a reflexive journal throughout the process. As the study progressed, regular reflection on the journal entries ensured that preconceptions and biases were actively considered and documented.

Results

Six overarching and superordinate themes emerged from the analysis: (a) A Personal Journey, (b) Navigating the System, (c) The Stigma of Dementia, (d) Connecting to the World, (e) A Story Worth Telling, and (f) I'm Still Here. Pseudonyms are used throughout the following sections to ensure participants' anonymity and confidentiality.

A Personal Journey

This theme embodies the idea that each individual's life experience is a subjective and unique phenomenon. Although all participants shared similarities with each other in terms of being a younger adult with EOD, each had his own story to tell about living with dementia at a young age, as noted by Barry: “Everyone is so different.... There's no one the same.” Although all participants reported memory difficulties of some kind, they also described symptoms and challenges that were distinct to their experience and journey of living with EOD.

Two different points of view became evident in terms of how participants reflect on and evaluate their quality of life. Some participants believed that they were living well with dementia, whereas others experienced marked decline in their quality of life. Mitch explained it is important to maintain a positive outlook on life:

Well I say, it's part of it. Suck it up, sunshine, and keep going. I mean, you know, you're not going to stop it. They are going to appear. Things are going to decline. Just build a bridge and get over it.

In contrast, Barry stated, “It's just…you know, there's no enjoyment in life anymore.”

Navigating the System

Based on participants' accounts, the theme of Navigating the System reflects the obstacles they faced and lack of resources they encountered. Overall, participants divulged that they did not find the resources available for individuals with dementia helpful for a younger adult. Paul said, “There's very little for somebody my age, you know—not that I'm super young, but I'm 56.” Several participants were initially told that they were likely experiencing depression or that their symptoms were related to causes other than dementia, as Mitch noted, “They blame depression, they blame stress, they blame everything else.” When symptoms were eventually more thoroughly investigated, they often saw multiple specialists. Barry explained he has seen approximately six neurologists.

The Stigma of Dementia

In addition to the difficulties of navigating the system, each participant experienced stigma. They all encountered lack of understanding and misperception, in which their diagnosis of EOD became the “stigmata,” or mark that distinguished them from others, making them feel different and affecting their self-worth. Mitch illustrated these feelings in his poem, STIGMA:

…My greatest challenge is to reduce the amount of stigma and put it in the past

Stigma to me is the greatest education factor not which is the last

Make it your personal quest spread the word and educate all

I tell as many people about dementia and stand tall…

According to Simon:

When you have that dementia, people seem to treat you differently…. It's sad that you can be talking to somebody and once you mention the D word—dementia—you can tell the conversation is going to end or change.

Staying Connected to the World

Although managing others' negative perceptions of dementia can be hurtful and demeaning, the changing life circumstances imposed by the disease, such as severed and affected social and family roles, can cause further isolation. Participants expressed a desire to find continued purpose and meaning in their lives, as well as to stay connected to the people and world around them. Thus, finding activities that give purpose and meaning seems crucial, and a meaningful way to stay engaged with the world and combat the prevailing message that all is hopeless. As Paul succinctly explained, “Every day is a bit of a challenge at times, but at the same time, you're still connected to the world.”

A Story Worth Telling

All participants believed that they had a story to share that was worth telling, and this was largely what led them to wanting to participate in the study. There was a strong sense within all of their accounts that not enough of the EOD experience is known about and understood, particularly from the affected individual's subjective point of view. Mitch explained, “…Unless they hear a personal story from somebody with dementia, they're not going to take a lot of notice.” All participants expressed a desire for others to ask them directly about their experiences with dementia. Simon noted, “I would love people to ask information and ask questions because if they can understand where I'm coming from, they'll probably understand my situation a lot better and probably be a little more forgiving.”

I'm Still Here

This is a powerful theme that was collectively revealed when examining participants' personal stories. Of all the themes, this one was most evident in the shared arts-based data. A fragment from one of Mitch's poems aptly describes this theme:

…Treat me as you wish to be treated

There is no need to be conceited

I am still me

Can you not see

I am still here

There is nothing for you to fear

Mitch further elaborated that it is a constant challenge to remind people that “I'm still here” and that “I'm still a person.” The theme I'm Still Here speaks to the sense that participants mostly feel like themselves and that their continued presence as fellow human beings in society must be recognized. As Simon explained, “I would tell the people just treat me like you treated me before. As simple as that.” He further explained that John Lennon's (1971) song, “Imagine,” is meaningful to him because “…[It speaks] to me and [reminds] me that I'm still a human being…. I can think, ‘Yeah, imagine if we are all the same.’”

Discussion

Superordinate themes that tell the collective story of living with EOD reveal an illness and life experience that is being lived and understood by individuals, which seems an obvious and trite observation. However, a robust sense of personhood and simply being people was present in all participants throughout the combined narrative. Their story reveals that they are individuals with EOD, each experiencing and managing the illness in his own personal way. Participants' identities as men, fathers, husbands, friends, and undeniably people are strongly portrayed. Of significance, they can also feel less of a person when others do not understand what they are going through, or when they feel that they cannot contribute and take part in the world around them.

Yet even this affected sense of self, of being different or changed from who they once were, adds to a fuller sense of personhood. Dementia is most often seen as a disease of ever growing losses that diminish the individual over time (Millett, 2011). For younger individuals, it can seem that the losses associated with dementia are magnified as the disease takes hold in the prime of life. Thus, some may see the threat to person-hood as greater for younger adults with dementia than for their older counterparts. Nevertheless, despite the challenges faced by participants as younger individuals with dementia, their story embodies personhood. This sense of personhood is evident throughout each thematic thread, especially in the theme I'm Still Here.

Implications for Practice

Improving the Diagnosis Process

The lasting impact of each participant's difficult journey to diagnosis is hard to ignore. Their frustration, concerns, and anger with the medical system are palpable in their personal accounts. It can be challenging for health professionals to diagnose dementia in a younger adult (Konijnenberg et al., 2016) and consequences exist with delay in diagnosis. Timely diagnosis is crucial so as to most effectively manage symptoms and allow the individual time to adjust and come to terms with the diagnosis (Mitchell, McCollum, & Monaghan, 2013; Westerby & Howard, 2011).

Increasing and Improving Resources and Supports

The current findings reinforce existing knowledge that individuals with EOD must make do with services that have been set up for older adults (Roach, Keady, Bee, & Hope, 2008). Moreover, the current study demonstrates that individuals with EOD want to be able to continue contributing to society and engage in meaningful activity, and that finding supports and resources to enable this would be helpful.

Reducing Stigma

Reducing stigma is a concern that all individuals with dementia face, regardless of age, and can in some ways define the entire experience of having dementia, whereby the label of “being demented” can become the most prominent feature of their life (Milne, 2010). Unfortunately, the common and damaging point of view that individuals with dementia are no longer the same person persists (Millett, 2011). As preserving hope is crucial to maintaining well-being when living with dementia (Wolverson, Clarke, & Moniz-Cook, 2010), it seems especially important to challenge the prevalent and hopeless view that those with dementia have little quality of life. When participants were not recognized as people in their own right and treated as if they could not hear or speak for themselves, this contributed to a further sense of isolation and was depersonalizing.

Honoring Personhood

It is significant that all participants verbalized that they believed that they were “still here” and that they continue to have a sense of who they are as people. This finding speaks to the importance of providing person-centered care, recognizing that each individual with dementia is unique and will see the world from a corresponding and distinctive point of view (Hurtley & Pitkin, 2013). Honoring personhood involves looking beyond symptoms, the dementia label, and whatever other preconceptions and prejudices are normally associated with dementia, and connecting foremost to the individual. To reiterate one participant's simple yet powerful words: “Treat me as you treated me before.” This is an important message for health care professionals and the general public. We cannot forget to treat those with dementia, regardless of age, as people. This message has implications in terms of the manner in which we talk about and to individuals with dementia and the language that is used, as well as how they are treated in communities and care facilities. These findings are consistent with those of Milte et al. (2016), who found that “supporting personhood was identified as a critical key concept underpinning quality…care, from the perspective of both people with cognitive impairment and their family members” (p. 9).

Involving Individuals With Dementia in Research

The impact of the lengthy and difficult journey that is the dementia experience is best understood and acknowledged by hearing the first-hand accounts of affected individuals. More research is needed to hear younger adults' subjective points of view to better inform the general public and health professionals of their experiences and difficulties, and to elicit their opinions of what could be done to improve care and resources. Few studies exist that involve individuals with dementia directly in research, which only serves to perpetuate stigma (Swaffer, 2014). It is important to involve individuals with dementia directly in research to be able to gain access to and learn from their life stories and experiences, and affirm their value as people worthy of being included in the body of dementia research.

Limitations

The current study did not include the perspective of women with EOD; all participants were men. Future studies should investigate whether accounts of living with EOD, specifically with regard to perceptions of personhood, would differ from a female perspective. It is possible that participants were more open to talking about themselves and their experiences than others. Those who were not interested in participating may represent a segment of the EOD population who may have completely different perceptions of what it means to be a younger adult with dementia. Another limitation is the small sample. A larger sample may reveal additional perspectives of the EOD experience.

Conclusion

The goal of the current study was to try to understand how those with EOD perceive themselves as younger adults experiencing the disease. As reflected in the theme I'm Still Here, individuals with EOD have a strong sense of personhood—one that deserves recognition, understanding, and respect.

Several implications for practice include improving the diagnosis process, increasing supports, and reducing stigma. The current study also demonstrates that it is necessary to honor personhood and continue to involve individuals with dementia in research. This study is a small beginning to make visible the voices of individuals with EOD. More research is needed that will assist health care providers in understanding the needs and experiences of these individuals and the ways in which they might facilitate strategies that can improve the health and well-being of this population. Although we all share in the human experience, we cannot understand each other fully without hearing others' voices firsthand. Whether family members, health professionals, or members of society, it is important to meet individuals with dementia in a space of caring that recognizes that they still exist beneath the disease.

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Authors

Ms. Sakamoto is PhD Student, School of Nursing, Faculty of Applied Sciences, University of British Columbia, Vancouver, British Columbia; and Dr. Moore is Professor, and Dr. Johnson is Associate Professor, Centre for Nursing & Health Studies, Faculty of Health Disciplines, Athabasca University, Athabasca, Alberta, Canada.

The authors have disclosed no potential conflicts of interest, financial or otherwise. This study was funded by the Athabasca University Graduate Student Research Fund.

Address correspondence to Mariko L. Sakamoto, MN, RN, PhD Student, School of Nursing, Faculty of Applied Sciences, University of British Columbia, 4866 Ontario Street, Vancouver, BC, V5V 3H5, Canada; e-mail: marikoliette.sakamoto@alumni.ubc.ca.

Received: July 30, 2016
Accepted: January 26, 2017

10.3928/00989134-20170309-01

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