published_or_final_version / abstract / Medicine / Doctoral / Doctor of Philosophy

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BACKGROUND: Retrospective and prospective memory deteriorate with age and deteriorate further with the onset of dementia. As previous research has tended to use idiosyncratic and heterogeneous methodologies, it is not known if the deterioration in retrospective or prospective memory is equal or how such deterioration is related to insight into mnemonic performance. DESIGN: The present study used a mixed, cross-sectional design. It examined retrospective and prospective memory in healthy and cognitively impaired older adults using objective and subjective assessment. METHODOLOGY: Twenty healthy and twenty cognitively impaired older adults were assessed. The objective measures were standardised and had high ecological validity, to maximise the assessments’ generalisability to everyday mnemonic functioning. The subjective measure was a standardised assessment of subjective appraisal of retrospective and prospective memory. This subjective assessment was used to gain self-ratings from the healthy and cognitively impaired older adults and, in addition, to gain proxy-ratings from the cognitively impaired older adults’ partners/carers. Participants were also assessed using a measure of general cognitive functioning. RESULTS: Healthy older adults performed significantly better than cognitively impaired older adults on both the retrospective and prospective memory test, although performance in both groups was higher on the prospective memory test than on the retrospective memory test. Neither proxy-ratings, nor overall severity of impairment, were associated with subjective assessment of prospective or retrospective memory. In the healthy older adults, self-rating of memory was not associated with objective memory performance. In the cognitively impaired older adults, however, higher self-ratings of memory were associated with poorer performance on the prospective memory test. DISCUSSION: The results suggested that both healthy and cognitively impaired older adults perform better on prospective memory tasks than retrospective memory tasks, but both types of memory deteriorate with the onset of dementia. Subjective memory appraisal is not related to objective memory performance in healthy older adults, but is negatively associated with prospective memory performance in cognitively impaired older adults. Findings were discussed in relation to previous research, along with a review of the strengths and limitations of the study. Clinical implications and directions for future research are also suggested.

This qualitative study used semi-structured interviews to explore how 6 people talked about their difficulties before and after a dementia diagnosis. The Assimilation of Problematic Experiences Scale (APES) was used to analyse the data and describe participants’ internal processes as they became increasingly aware of their problems. Assimilation analysis views successful therapeutic change as accepting and integrating an aspect of the self that had previously been denied, due to it being too painful. The findings of the study build on the research evidence that suggests that despite the enormity of its psychological implications individuals find ways of integrating a dementia diagnosis into their sense of self. This occurred within an oscillating progress; stepping in and out of awareness, illustrating the paradox of acceptance and denial. Social support was crucial in enabling participants to sustain a positive sense of self in the face of this adjustment.

The aim of this thesis is to demonstrate that new and varied views of dementia surface when the concept of intersectionality is applied to dementia research; and that these perspectives pose challenges to our assumptions about what it is like to have dementia. Grounded theory research from a feminist and anti-oppression perspective was undertaken to explore the question of the relationships between older people‘s experiences of dementia and the intersections of gender, class, ‘race’, and ethnicity. During nine months of field research in Canada, interviews, participant observation, photography, and focus groups were undertaken with eight older people with dementia and their significant others. The participants ranged from multiply marginalized to multiply privileged on the basis of their ‘race’, ethnicity, gender, and class. The grounded theory arising from this research explains the complex nature of the relationships between the subjective experiences of older people living with dementia and the intersections of ethnicity, ‘race’, class, and gender. I argue that there is a connection between social location and lived experiences of dementia; and that these relationships can be observed across and within the categories of experiencing, othering, and theorising. Experiencing captures the diversity of older people’s experiences of dementia, which range from ‘not a big deal’ to ‘a nuisance’ to ‘hellish’: these views are associated with social location, with the multiply privileged older people holding the most negative views of dementia and the multiply marginalized older people dismissing the significance of dementia. Othering refers to the marginalisation to which people with dementia are subject: it is shown to be a marked feature of life with dementia and to be connected to social location, with the multiply privileged people being othered more often as a result of their dementia status; the more marginalised participants demonstrating resilience (as an acquired characteristic); and all being subject to both othering practices and enabling behaviours enacted by members of their social worlds, such as their significant others. The theorising category refers to people with dementia being active meaning makers who theorise about dementia: the outcome of this intellectual activity is shown to be related to social location, with the most privileged participants being the only ones to view dementia as a brain disease; and all others making strategic use of the normal aging theory to avoid marginalisation due to dementia. The result of the theorising done by older people with dementia is a dialectical theory of dementia that positions dementia as a bio-psycho-social phenomenon, disrupts the false dichotomy between normal and pathological, and integrates emic and etic perspectives on dementia.

Nu för tiden blir människan äldre och med det så ökar risken för att insjukna i demens. Det är en obotlig sjukdom som innefattar en grav försämring av personens minne och intellekt och som slutligen leder till döden. Sjukdomen påverkar inte bara den drabbade utan även alla i dennes omgivning. Symtomen kommer smygande, vanligt är försämrat minne, intellekt och förändrad personlighet. Många av de drabbade är nedstämda, oroliga och kan även vara aggressiva. Detta beror på att de fortfarande har kvar sina känslor och kan känna att något är fel, men de kan inte sätta fingret på vad som är fel. Vid sjukdom så är behovet av stöd oftast stort och det är sjuksköterskans ansvar att ge stöd till den som behöver. För att kunna bemöta de behov som finns behövs kunskap om hur närstående upplever sin situation. Begränsad forskning finns kring närståendes erfarenheter av demenssjukdomen, och majoriteten av forskningen är inriktad på sjukdomen och hur den påverkar hjärnan och patienten. Därför valdes en litteraturbaserad studie till examensarbetet för att belysa erfarenheter av att vara närstående till en äldre person med demenssjukdom. Detta innebär att författarna granskat 10 artiklar från vetenskapliga tidskrifter och sammanställt till ett eget resultat. Temana som bildades efter granskningen var närståendes erfarenheter av stöd och sjukdomens progression och dess effekter på relation och känslor. Det första temat fokuserar just på de närståendes erfarenheter av stöd. Både från vården och andra i samma situation. Resultatet visar att stödet från sjuksköterskan bör vara lättillgängligt och ges i tidigt skede av sjukdomen för att undvika ohälsa. Även att prata med andra i samma situationer var viktigt, många tog hjälp av stödgrupper för att få råd. Andra ville inte ha stöd från sina familjer då de inte ville lägga bördan på dem så de tog själva allt ansvar för den drabbade. Sjukdomens progression och dess effekter på relation och känslor belyser de olika problem som uppkommer under sjukdomens gång. Det förändrade beteendet hos den drabbade skapade irritation och frustration hos de närstående, till exempel när den drabbade tappade tråden i samtal eller uppträdde förvirrat. I samband med det förändrade beteendet formades en ny relation till den drabbade. Känslor av skuld och skam var närvarande för många och specifikt för makar var sorgen av att ha mist den man en gång delat livet med. / Background: Dementia not only affects the individual patient, but also healthcare professionals and the relatives. It is an increasing incurable disease that affects the mind of the afflicted person. He or she will experience difficulties with either expressing oneself, recognizing daily things, performing tasks that he or she previously were able to managed or the ability to plan, initiate or complete various tasks. Aim: The aim of this study was to illuminate experiences of being a relative of an older person afflicted of dementia. Method: A literature based study was performed, analyzing 10 qualitative articles. Results: The results consist of two main themes, relatives experiences of support, with two subthemes, support in the care relationship and support from others in the same situation. The second theme progression of the disease and its affects on relations and feelings, with three subthemes, the partners behavioral change, a new kind of relationship and impact of the disease on feelings. These highlight significant experiences the relatives go through in relation to the disease. Support was something that may be given in different ways and the need for support was necessary. The behavioral change that comes with the disease, results in a new form of relationship with the affected. Feelings of sadness, guilt and shame were constantly present. Conclusion: The results shows that the relatives need support through the entire disease progression when the behavior of the affected changes and a new relationship is formed. When accepting the disease, the relatives found it easier to deal with life in general. Nurses need to have the means to respond to these relatives and to know how they experience their situation, to be able to support them in the best possible way.

There is evidence that older Canadians have a higher incidence of presenting to the emergency department (ED) than any other age group. These visits may be made more complex if individuals are also cognitively impaired or have dementia. The purpose of this study was to explore ED nurses’ experiences of caring for adults with dementia in the ED. Using an interpretive descriptive approach, 12 registered nurses working in different EDs in an urban setting in Western Canada were interviewed about these experiences. Using the thematic analysis process described by Braun and Clarke, four themes were identified: 1) not a priority; 2) not the right place; 3) get them in, get them out; and 4) getting it wrong. The nurses identified that challenges in the care of persons with dementia in the ED are created by the fast-paced and chaotic environment of the ED, staffing, issues with disposition, and safety concerns. Suggestions for improving the care of persons with dementia were provided by the nurses. / October 2016

Thesis advisor: Ellen K. Mahoney / Purpose: The purpose of this study was to describe meaningful interactions with health care providers (HCPs) from the perspectives of family caregivers of persons with dementia (PWD). A secondary purpose was to understand ways in which family caregivers obtained needed information for managing uncertainty associated with providing care for a PWD. Background: Family members of PWD often assume the caregiver role, but lack preparation for the psychological and practical ramifications of caring for someone with a progressive, terminal illness (Alzheimer's Association, 2011a). Lack of preparedness for caregiving impacts well-being and quality of life throughout the caregiving experience (Lilly, Robinson, Holzman and Bottorff, 2012). Meaningful interactions with HCPs have the potential to improve preparedness and alleviate suffering of caregivers, promote caregiver well-being and positively impact treatment provided to PWD. Methods: Qualitative description was used to obtain rich, straightforward descriptions from perspectives of participants. Congruent with this approach, findings were reported with minimal inference. Results: Positive meaningful interactions with HCPs included interactive dialogue, partnering between HCPs and caregivers, and a sense of being known as individuals with unique needs. Negative meaningful interactions were characterized as lacking one or more of those components. Participants used multiple strategies to obtain information and manage uncertainty associated with caregiving. Efforts to obtain care for PWD were often complicated by challenges of a health care system that was not designed to meet the needs of PWD. Conclusions: HCPs have opportunities to improve interactions, provide support and increase preparedness for family members providing care for PWD. HCP: caregiver partnerships can improve care for PWD and mitigate stressors inherent in the caregiving role. Corrective experiences may change caregivers' perceptions and provide opportunities for HCPs to intervene, engage and partner with health care consumers. Nurses are particularly well-suited to taking a leadership role in fostering partnerships and helping to design a dementia-ready system to meet the needs of PWD and those who care for them. / Thesis (PhD) — Boston College, 2014. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.