Enacting person-centred care in home care services for people with dementia.

AIMS AND OBJECTIVES: To develop the theoretical understanding of the process of providing person-centred home care for people with dementia. BACKGROUND: People with dementia are increasingly cared for at home by family members and home care staff. Care of people with dementia should be person-centred; however, little is known about how home care staff understand and enact person-centred care in their daily work. DESIGN: Grounded theory. METHODS: Home care staff (n = 29) were recruited from home care services specialised in providing care for people with dementia. Group interviews were conducted, and a tentative theoretical model for providing person-centred home care to people with dementia was outlined. Nine of the participants were then individually interviewed to further develop the model. The analysis was conducted parallel to the data collection, and hypotheses concerning the evolving theoretical model were continuously tested in the following interviews. The COREQ checklist for qualitative studies was used in reporting the study. RESULTS: Person-centred home care of people with dementia was conceptualised as a series of processes: Getting ready, getting in, giving care, getting out and finalising the story, each with subprocesses. Theatre metaphors were used to describe how the care was provided. A core process, Enacting and re-enacting familiarity, was at centre in all processes. CONCLUSIONS: In the person-centred care of people with dementia, familiarity had to be established and continuously fostered. When familiarity was in place, the care recipient and the home care staff acted as a team to perform the care. The theoretical works of Goffman were used to interpret the results. RELEVANCE TO CLINICAL PRACTICE: The study provides a model for person-centred care of people with dementia at home that deepens the understanding of its processes, prerequisites and outcomes. The model can inform education and administration of home care for people with dementia.

Trends in the place of death in Sweden from 2013 to 2019 - disclosing prerequisites for palliative care.

Background: The drive for home care has increasingly impacted the organization and allocation of resources within the Swedish healthcare system. Objectives: With an interest in uncovering prerequisites for palliative care, this study aimed to investigate longitudinal trends in place of death within the adult Swedish population from 2013 to 2019 and examine potential associations between place of death and individual, geographic, and socioeconomic factors; hospital capacity; and healthcare utilization. Methods: This population-level comprehensive register study included all deceased individuals ⩾18 years old with a registered place of death (n = 599,137). Data were retrieved from public and patient data registers and the national register for palliative care. Trends and associations between place of death and co-variables were investigated by logistic regression- and interaction analyses. Results: From 2013 to 2019, the total number of home deaths increased by 1.9%, whereas the number of hospital deaths decreased by 2.6%. In the overall population of individuals living in their own homes, from 2013 to 2019, the likelihood of dying in hospital versus dying at home decreased (odds ratio: 0.98, 95% confidence interval: 0.97-0.99). Within the population with potential palliative needs living in their own home (78.4%), the likelihood of dying in hospitals equally decreased, except in Stockholm and the north region. For individuals residing in a nursing home, however, the likelihood of dying in hospital versus remaining in the nursing home until death only significantly decreased in the southern region. Conclusion: The results show a trend towards a decrease in hospital deaths but with cross-regional variations. Still, in 2019, only about one-fifth of all individuals died in their own homes. Public health-oriented interventions aimed at strengthening palliative care resources in nursing homes and home care are suggested.

Living in uncertainty while a spouse is undergoing a cognitive assessment: Voices of women care partners.

INTRODUCTION: Women often support partners with cognitive symptoms during the assessment process and when they are receiving a cognitive diagnosis. Living with a partner with cognitive symptoms can be stressful; however, there is limited insights into the specific experiences of older women during the assessment process. Previous research indicates that there are gender differences in the experiences of spousal caregiving; however, further research is needed in regard to the experiences of men and women as care partners. Therefore, the aim of the present study was to describe women's experiences of living with a partner undergoing a cognitive assessment. METHODS: Semi-structured interviews were conducted with seven women when their male partners commenced a cognitive assessment and after the assessment had been completed. The interviews were analysed with abductive content analysis. FINDINGS: Uncertainty permeated the women's experiences. Antecedents, attributes and strategies to manage the uncertainty were described. CONCLUSION: The participants expressed informational and existential uncertainty when their partner underwent a cognitive assessment. A lack of knowledge regarding the assessment process and cognitive diagnoses, especially mild cognitive impairment, was identified. Further, there was a need to process existential uncertainty evoked by the situation.

Embarking on a memory assessment voices of older persons living with memory impairment.

AIM: To describe older persons who had commenced a memory assessment, experiences of living with memory impairment and related symptoms. BACKGROUND: Persons with subjective memory impairment are two times more likely to develop dementia over the years than their peers. Older persons seldom seek help from primary health care clinics solely for subjective memory impairment. Of those who seek help, it can take up to 35 months from the person experiencing initial symptoms to referral to a memory clinic. Further research is needed regarding how older persons live with memory impairment with related symptoms before they receive a memory diagnosis. METHOD: A qualitative study with 23 participants who had commenced a memory assessment in primary care. Semi-structured interviews were held. During the interviews, the Neuropsychiatric Inventory was completed and discussed with the participants. Interview data were analysed using Interpretive Description. RESULTS: The results are presented under four themes: Conflicting views about the situation, Unveiling the presence of neuropsychiatric symptoms, Compensating with external and internal strategies to recall and Worrying about self and future. Persons with memory impairment were encouraged by family members or others to seek a memory assessment. Few persons were self-referred as memory impairment was often seen as a part of aging. Polarised viewpoints existed within the families regarding the impact of memory impairment on daily life. The presence of neuropsychiatric symptoms appeared unexplored in the participants seeking a memory assessment. In this study, the majority of participants experienced neuropsychiatric symptoms at the time of contact for a memory assessment. CONCLUSIONS: Memory problems experienced were often viewed by the person as being part of an aging process. The presence of neuropsychiatric symptoms was not acknowledged as being connected to memory impairment. Contextualising 'memory impairment' as a part of a 'cognitive process' may help the person in identifying the presence of neuropsychiatric symptoms.

Feeling valued versus abandoned: Voices of persons who have completed a cognitive assessment.

AIM: To describe older persons' experiences of a cognitive assessment and possible neuropsychiatric symptoms [NPS] related to a neurocognitive diagnosis. BACKGROUND: A cognitive assessment in primary care is offered to persons with suspected dementia with subsequent referral to a specialist clinic if required. The assessment process, with the likelihood of receiving a dementia diagnosis, is surrounded by uncertainty with long waiting times. Although NPS are common among persons with cognitive impairment persons are not routinely asked about these symptoms during a cognitive assessment. METHOD: Interviews were held with 18 participants who had completed a cognitive assessment. The Neuropsychiatric Inventory [NPI] was incorporated into one of the interview questions enabling participants to self-report NPS, if present. Interview data were analysed using Interpretive Description. RESULTS: Two main themes were identified: a matter of trust and making sense of a cognitive diagnosis. Experiences of the assessment process ranged from feeling valued to abandoned with variations of trust in the process. A diagnosis of mild cognitive impairment was experienced as an abstract diagnosis devoid of follow-up support. A lack of preparedness for the assessment existed among participants. Some experienced the process as standardised. One half of participants self-reported the presence of one to four NPS, regardless of neurocognitive diagnosis. Irritability and depression were most common NPS identified. CONCLUSIONS: Experiences of a cognitive assessment varied from feeling valued by society to abandoned in the absence of follow-up support. The assessment was viewed as a standardised procedure failing to see the person behind the testing. Diagnosis disclosure conversations were experienced as diffuse with participants unprepared for a dementia diagnosis. The NPI enabled participants to identify and report the presence of NPS which otherwise could go undetected during the cognitive assessment, impacting on the person's well-being and daily life.

Agency and Communion in People with Alzheimer's Disease, as Described by Themselves and their Spousal Carers.

Agency (individuality) and communion (togetherness) are vital to a positive sense of self. People with Alzheimer's disease are at risk of experiencing diminished agency and decreased communion. Their family members', especially their partner's, view on their agency and communion is also likely to influence their sense of agency, communion, and self. In the present study, individual interviews with 10 people with Alzheimer's disease and their spousal carers were qualitatively analysed to describe how in each couple the two spouses viewed the agency and communion of the person with Alzheimer's disease from an individual perspective. The findings show that the carers generally described the agency of the person with Alzheimer's disease as slightly weaker compared with the persons with Alzheimer's disease themselves. The carers also appeared to have poor knowledge of what supported and threatened the sense of communion of the person with Alzheimer's disease.

Enabling At-Homeness for Older People With Life-Limiting Conditions: A Participant Observation Study From Nursing Homes.

At-homeness, as an aspect of well-being, can be experienced despite living with life-limiting conditions and needs for a palliative approach to care. In nursing homes, older residents with life-limiting conditions face losses and changes which could influence their experience of at-homeness. The aim of this study was to explore how nursing staff enable at-homeness for residents with life-limiting conditions. Interpretive description was employed as the design using data from participant observations and formal and informal interviews related to nursing care situations. The strategies found to be used to enable at-homeness comprising nursing staff presenting themselves as reliable, respecting the resident's integrity, being responsive to the resident's needs, collaborating with the resident in decision-making, and through nurturing comforting relationships. The result on how to enable at-homeness could be used as strategies for a person-centered palliative approach in the care for residents in nursing homes.

Temporally and spatially shaped meanings of at-homeness among people 85 years and over with severe illness.

AIMS AND OBJECTIVES: The aim of the study was to illuminate how meanings of at-homeness are temporally and spatially shaped by older people with severe illness. BACKGROUND: At-homeness can be understood as a feeling of being metaphorically at-home while experiencing well-being. The research field of at-homeness among older people with severe illness is under researched and knowledge about how at-homeness is shaped by time and place is limited. METHOD: Narrative interviews were conducted in Sweden with a total of twenty men and women who were aged 85 years or over and affected by severe illness. The narrative interviews were analysed based on a phenomenological hermeneutical method. RESULTS: Meanings of at-homeness that were shaped temporally and spatially were interpreted, where time and place were shaped individually by other aspects and also interwoven. Two main inter-related themes were constructed: shaping at-homeness through relying on a familiar place and shaping at-homeness through continuous balancing between the past, present and future. CONCLUSION AND IMPLICATIONS: At-homeness is temporally and spatially shaped in two ways: through a process over time, or momentarily, where older people's earlier experiences and expectations are interwoven with their experiences of place and the people around them. The results of this study would be applicable to similar societal contexts. For future research, it is important to continue to study how at-homeness can be promoted for severely ill older people, in specific situations and over time.

Sense of Self in Alzheimer's Research Participants.

The sense of self is vulnerable in people with Alzheimer's disease (AD), and might be positively and negatively influenced by research participation. The purpose of this study was to describe how people with AD express their experience of being a research participant with respect to their sense of self. Interviews and support group conversations involving 13 people with mild and moderate AD were analyzed using qualitative content analysis. Three themes were constructed: contributing to an important cause, gaining from participating, and experiencing risks and drawbacks. Participants described contributing to research as being in line with their lifelong values and lifestyles. They expressed contentment and pride about being research participants, emphasized their positive relationships with the researchers, and described participation as a meaningful activity. When research procedures threatened their sense of self, they were able to reason about risks and decline participation.

Enabling at-homeness for residents living in a nursing home: Reflected experience of nursing home staff.

Older people are often living the last period of their lives in institutions such as nursing homes. Knowledge of this period, specifically related to at-homeness which can be described as wellbeing in spite of illness and has been regarded as one of the goals in palliative care, has been very little researched in the context of nursing homes and the experience of nursing home staff. The aim of this study was to explore the experiences of nursing home staff of how to enable at-homeness for residents. Qualitative interpretive description methodology guided the design. The data generation was conducted in winter 2014-2015, when seven repetitive reflective group discussions with staff in a nursing home were held. The results show five patterns for how healthcare staff enabled at-homeness for the residents: Striving to know the resident, Showing respect for the resident's integrity, Creating and working in family-like relationships, Helping to find a new ordinariness and Preparing and making plans to ensure continuity. Nursing home staff seem to have collegial knowledge of how to enable at-homeness for the residents in a nursing home. Close relationships with respect for the resident's integrity stand out as enabling at-homeness.

Expressed Sense of Self by People With Alzheimer's Disease in a Support Group Interpreted in Terms of Agency and Communion.

The self is constructed in cooperation with other people and social context influences how people perceive and express it. People with Alzheimer's disease (AD) often receive insufficient support in constructing their preferred selves, but little is known about how they express themselves together with other people with AD. In accordance with Harré's social constructionist theory of self, this study aimed to describe how five people with mild and moderate AD express their Self 2 (i.e., their personal attributes and life histories) in a support group with a facilitator experienced in communicating with people with AD. The participants' expressions of their Self 2 were analyzed with qualitative abductive content analysis and interpreted in terms of agency and communion and a lack of agency and communion. The findings highlight the importance of supporting a sense of agency and communion when assisting people with AD in constructing their self.

Social positioning by people with Alzheimer's disease in a support group.

People with Alzheimer's disease (AD) are often negatively positioned by others, resulting in difficulties upholding a positive sense of self. This might cause them to withdraw socially and apparently 'lose their minds'. Conversely, the sense of self can be strengthened with the support from others. This study aimed to describe, in accordance with positioning theory, how people with moderate AD positioned themselves and each other in a support group for people with AD. We describe five first-order positions; the project manager, the storyteller, the moral agent, the person burdened with AD, and the coping person. In the interactions that followed among the support group participants, those positions were mainly affirmed. This enabled participants to construct strong and agentic personae, and to have the severity of their illness acknowledged. Despite their language impairment participants managed to position and reposition themselves and others by assistance of the trained facilitator.

How people with Alzheimer's disease express their sense of self: analysis using Rom Harré's theory of selfhood.

The aim of this study was to use Harré's social constructionist theory of selfhood to describe how people with mild and moderate Alzheimer's disease (AD) express their sense of self. The findings show that Self 1, the embodied sense of being a person, was expressed fluently by participants through the use of first-person indexicals. Self 2, the experienced personal attributes and life narrative, had undergone changes. Those changes were not entirely for the worse; participants had also developed new skills in managing life with AD. In a lifetime perspective, those changes were minor and participants perceived themselves to be basically the same people that they were before having AD. When constructing Self 3, the social personae, participants usually described being supported by others, but sometimes described being exposed to malignant positioning. They also feared that they might become more exposed to negative attitudes as their AD progressed. However, participants were understanding towards the offensive behaviours of others.