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Publication
The lived experience of older people living with early-stage dementia
Book - Dissertation
BackgroundDementia is one of the most prevalent mental health problems among older people. Dementia, even in the early stage, may challenge ones quality of life. The diagnosis of dementia entails a diagnosis of the disease as well as a diagnosis of the care needed. This care should be pro-active, aimed at reducing excessive disability, dependency, and suffering, and with a focus on well-being, pleasure and empowerment. Nurses are often confronted with older people with early-stage dementia and may take up an important role in providing pro-active care. The present evidence based guidelines on management of dementia acknowledge the importance of pro-active care, yet the care guidelines mainly focus on pro-active support for the family caregiver and little if not for the person with dementia. Having accurate knowledge of what one experiences when living with dementia is important in order to focus pro-active care towards enhancing quality of life. Qualitative research is fundamentally well suited to obtain an insiders view of living with early-stage dementia. Although there are several studies into the subjective experience of people with dementia, longitudinal research in this area is scarce. Longitudinal research is important as in dementia due to progressive decline the person with early-stage dementia continuously faces new challenges in living with this disease.AimThis study aims at providing a better understanding of what it means for older people to live with early-stage dementia. The study has the purpose to explore how these people come to understand and cope with their changing life due to dementia. The longitudinal aspect of the study aims at exploring which changes may occur in the lived experience over time and what may trigger these changes. This study aims to contribute to the enhancement of pro-active nursing care which allows the person with dementia to receive the care that is beneficial to his or her wellbeing in such a way that it supports her/his dignity and autonomy.MethodsWe performed a longitudinal constructivist grounded theory study. Our initial sample consisted of 20 persons aged 65 years or older recently diagnosed with early-stage dementia (Clinical Dementia Rating 0.5 or 1) and one or more of their family members. The participants were recruited from five memory clinics in Flanders, Belgium. We included family members in our study sample only for context information. Seventeen elderly persons could be included in the longitudinal study, in which we had for most persons 3 to 4 interviews over a period of 10 to 12 months.Data were collected through open in-depth interviews. In total 74 interviews were conducted: 30 with only the person with dementia, 21 with only family member(s), and 23 with the person and family member(s) together. Interviews were analysed using the constant comparative method and narrative analysis. Data-, analysis-, and researcher triangulation were used to increase the trustworthiness of thefindings.Results
The study comprised three major phases. In a first phase the analysis of the first interviews led to a strikingly positive story. In this story the respondents emphasized competences and positive characteristics and minimized problems. This story was in contradiction with the suffering discerned in literature and with the stories of the families. The quest to understand the meaning of these initial findings, resulted in a deeper level of analysis. Interpretative concepts of being valued and not being valued were formulated, and a balance between the two concepts was identified. Careful analysis of our interaction with the participants in the interviews, theoretical constructs of identity and findings from literature review led to the second phase of the analysis in which a model of a struggle to being valued was developed. The generated model proposes that being valued is more central in the lived experience of older people with early-stage dementia, than is their memory loss. However, the model suggests also that these people are constantly balancing their feelings of value and worthlessness, struggling to remain someone of value. This struggle is prompted by threats posed by dementia and by the persons interactions with others. In a third phase we analysed changes over time, in particular with regard to the model that had been developed in the second phase. We identified an on-going struggle to being valued and an important shift in being valued for what you do to being valued for who you are. This progression represents a shift in core values of identity that are performance related toward ones that are existence related, being foremost the ability and power to accept loss. Dependency emerged as an important trigger for this shift. In a final phase the positive story of being valued and the identified shift in being valued were discussed with regard to and integrated within the literature, to illuminate further the meaning of the theoretical model of (a struggle of) being valued. The positive story is considered as an act of agency, expressing that the person still has a mind of his own and is in control of his self and even in control of his world, or at least it may express the desire to do so. The positive story may communicate the need to protect ones self-image from the negative perception of dementia or the request to others to adjust their overly negative perception of dementia (i.e. counterstory). The positive story may also communicate true positivism in the experience of living with early-stage dementia. It may represent the power to remain of value despite loss and the hope one may still flourish as a human being.Discussion These findings suggest that being valued is central in the experience of living with early-stage dementia, and that it can be maintained by accepting loss. However, this is not an acceptance out of surrender, yet it may require a constant struggle. This acceptance may allow the person with dementiato remain autonomous in view of dependency. The positive story as an act of agency may provide a guide for the development of a caring environment. It requires competent nurses who are able and willing to listen carefully and move beyond the exact wording to hear and understand the true story. It requires nurses as competent co-creators of positive stories, especially as dementia may affect the capacity to (re)construct a story or the negative imagery of dementia may lead people with dementia to believe one is no longer able to do so. It requires nurses with an open and authentic attitude that may make the person with dementia feel safe to tell his or her story. The positive story is a story about being valued and supporting value and agency should be central in caregiving, as is the provision of hope. Nurses need to provide care aimed at valuing people with dementia in their uniqueness. Support for the continuity of the (historical value of the) person needs to be carefully balanced with space for adaptation (and growth). Advanced care planning should focus on this potential for positive adaptation, including advice on how to overcome obstacles. Nurses will need to balance along with the person with dementia, gauging when support of value is more appropriate and when understanding for the feeling of not being valued is more appropriate. Counterbalancing may be especially warranted if the person with dementia is not able to shift his or her value and is not able to accept loss without losing hope. Respect for the agency of the person with dementia also means that there should be openness to discuss the value of living when acceptance has reached its limits.Supporting the value and the agency of the person with dementia also means supporting those who are close to the person with dementia. These recommendations for practice pose major challenges to our thinking about care for older people with early-stage dementia, to our thinking about autonomy and dependency of these people, and to the acknowledgment of listening to and co-creation of stories as nursing interventions. This will require adaptations in education and staffing issues. The present model of (a struggle to) being valued needs further elaboration to bring more nuance to the concept of being valued and the process of maintenance of being valued in living with early-stage dementia. Possible influences of socio-cultural diversity, of aging, of disease elements (disease specific diagnosis, non-cognitive psychological and behavioural symptoms, level of awareness), of failures to make the shift in being valued should be further explored. The partnership with family members should be more acknowledged and studied for its importance in maintenance of being valued, as is the lack of social support. Caregiving situations or interventions may be observed to see how they may impede or support being valued. And finally, efforts should be made to maximize openness and the co-constructing between the researcher and the participants with dementia in future research, and this may require innovative research approaches. Findings from this research have important societal value. In our society where productivity prevails, it is important to make people aware that, no matter what, all persons possess important value in their being. Having dementia and losing the ability to be productive does not mean one ceases to exist as a valuable person.
The study comprised three major phases. In a first phase the analysis of the first interviews led to a strikingly positive story. In this story the respondents emphasized competences and positive characteristics and minimized problems. This story was in contradiction with the suffering discerned in literature and with the stories of the families. The quest to understand the meaning of these initial findings, resulted in a deeper level of analysis. Interpretative concepts of being valued and not being valued were formulated, and a balance between the two concepts was identified. Careful analysis of our interaction with the participants in the interviews, theoretical constructs of identity and findings from literature review led to the second phase of the analysis in which a model of a struggle to being valued was developed. The generated model proposes that being valued is more central in the lived experience of older people with early-stage dementia, than is their memory loss. However, the model suggests also that these people are constantly balancing their feelings of value and worthlessness, struggling to remain someone of value. This struggle is prompted by threats posed by dementia and by the persons interactions with others. In a third phase we analysed changes over time, in particular with regard to the model that had been developed in the second phase. We identified an on-going struggle to being valued and an important shift in being valued for what you do to being valued for who you are. This progression represents a shift in core values of identity that are performance related toward ones that are existence related, being foremost the ability and power to accept loss. Dependency emerged as an important trigger for this shift. In a final phase the positive story of being valued and the identified shift in being valued were discussed with regard to and integrated within the literature, to illuminate further the meaning of the theoretical model of (a struggle of) being valued. The positive story is considered as an act of agency, expressing that the person still has a mind of his own and is in control of his self and even in control of his world, or at least it may express the desire to do so. The positive story may communicate the need to protect ones self-image from the negative perception of dementia or the request to others to adjust their overly negative perception of dementia (i.e. counterstory). The positive story may also communicate true positivism in the experience of living with early-stage dementia. It may represent the power to remain of value despite loss and the hope one may still flourish as a human being.Discussion These findings suggest that being valued is central in the experience of living with early-stage dementia, and that it can be maintained by accepting loss. However, this is not an acceptance out of surrender, yet it may require a constant struggle. This acceptance may allow the person with dementiato remain autonomous in view of dependency. The positive story as an act of agency may provide a guide for the development of a caring environment. It requires competent nurses who are able and willing to listen carefully and move beyond the exact wording to hear and understand the true story. It requires nurses as competent co-creators of positive stories, especially as dementia may affect the capacity to (re)construct a story or the negative imagery of dementia may lead people with dementia to believe one is no longer able to do so. It requires nurses with an open and authentic attitude that may make the person with dementia feel safe to tell his or her story. The positive story is a story about being valued and supporting value and agency should be central in caregiving, as is the provision of hope. Nurses need to provide care aimed at valuing people with dementia in their uniqueness. Support for the continuity of the (historical value of the) person needs to be carefully balanced with space for adaptation (and growth). Advanced care planning should focus on this potential for positive adaptation, including advice on how to overcome obstacles. Nurses will need to balance along with the person with dementia, gauging when support of value is more appropriate and when understanding for the feeling of not being valued is more appropriate. Counterbalancing may be especially warranted if the person with dementia is not able to shift his or her value and is not able to accept loss without losing hope. Respect for the agency of the person with dementia also means that there should be openness to discuss the value of living when acceptance has reached its limits.Supporting the value and the agency of the person with dementia also means supporting those who are close to the person with dementia. These recommendations for practice pose major challenges to our thinking about care for older people with early-stage dementia, to our thinking about autonomy and dependency of these people, and to the acknowledgment of listening to and co-creation of stories as nursing interventions. This will require adaptations in education and staffing issues. The present model of (a struggle to) being valued needs further elaboration to bring more nuance to the concept of being valued and the process of maintenance of being valued in living with early-stage dementia. Possible influences of socio-cultural diversity, of aging, of disease elements (disease specific diagnosis, non-cognitive psychological and behavioural symptoms, level of awareness), of failures to make the shift in being valued should be further explored. The partnership with family members should be more acknowledged and studied for its importance in maintenance of being valued, as is the lack of social support. Caregiving situations or interventions may be observed to see how they may impede or support being valued. And finally, efforts should be made to maximize openness and the co-constructing between the researcher and the participants with dementia in future research, and this may require innovative research approaches. Findings from this research have important societal value. In our society where productivity prevails, it is important to make people aware that, no matter what, all persons possess important value in their being. Having dementia and losing the ability to be productive does not mean one ceases to exist as a valuable person.
Number of pages: 173
Publication year:2013
Accessibility:Closed