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The purpose of this paper is to further understand the needs of carers when a relative with dementia is admitted to an organic impatient ward.

A constructivist grounded theory approach was employed to generate a substantive theory to understand the needs of carers and how staff perceive carer needs when a relative is admitted to a dementia ward. Five relatives and six members of staff were interviewed using purposive and theoretical sampling. Interview transcripts were analysed using initial, focused and theoretical coding using constant comparative methods to develop the end theory.

The grounded theory concluded that carers have three categories of needs: “The Safe and Cared for Relative”, “The Informed Carer and “The Understanding, Responsive and Available Service”. Underpinning the needs are the relationships between carers, their relative and staff. Three barriers were identified which can impact on these needs being effectively met. These identified barriers were: Loss, Time and Ineffective Communication.

The grounded theory demonstrates that carers needs fundamentally relate to their relatives being safe and cared for and being included and informed during the admission. Relationships can be ruptured when a barrier prevents the needs from being effectively met. Recommendations are made to aim to reduce the impact of the barriers and to aid staff in developing their understanding of the carer experience.

Dementia is characterized by the progressive decline in cognitive and daily functioning. Although the decline is often the defining characteristic of dementia in biomedical models, several scholars highlight the preserved skills of persons with dementia. Identity, or a sense of self, is among the areas relatively preserved in the later stages of dementia. It is the window through which caregivers understand the subjective experiences of persons with dementia.

This qualitative exploratory study highlights the value of social relationships, particularly the role of the Filipino family in recognizing personhood and maintaining identity in dementia care. Preserving identity entails understanding the person’s unique characteristics that reflect one’s sense of self. In a highly collectivistic culture, such as the Philippines, the family is crucial to preserving identity and overall well-being in dementia. This study explores the perspectives of 15 Filipino caregivers as regards caring for a family member with dementia. Participants discuss changes in family structure and the challenges in dementia care. More importantly, they delve into strategies used to preserve identity and encourage life participation in their loved one with dementia. Essential Filipino cultural values in dementia care, such as collectivism, religion, and the values of filial piety and utang na loob (or debt of gratitude) are further discussed.

This study aims to systematically evaluate the impact and effectiveness of two early intervention services in NW Kent.

Data were gathered via evaluation questionnaires for both projects; these included quantitative post-intervention data and qualitative comments. Data on referrals to secondary care and a specialist third sector organisation were also collected for the primary care project.

Findings from the primary care project indicate that targeting a specific age cohort of patients can be effective in terms of: early identification of dementia-related concerns, the provision of support, appropriate referrals to secondary care, and increased referrals to a third sector dementia service. At the end of the project most practitioners felt they were better informed about dementia, more committed to facilitating early diagnosis, and had gained confidence in using a screening tool (the General Practitioner Assessment of Cognition Test). Evidence from evaluating the Carers Group suggests that attendance helped members manage emotional difficulties, increased understanding of dementia, and enhanced coping skills. They also felt less isolated and knew how to access support services.

The projects offer two models of intervention: how a proactive third sector agency can work with primary care professionals to enhance commitment to dementia case finding and the provision of group support to relatives of those in receipt of a recent dementia diagnosis.

The study provides insights into early intervention in dementia care how to evaluate impact of effectiveness.

The purpose of this paper is to highlight the complexity surrounding the implementation of advanced electronic tracking, communication and emergency response technologies, namely, an extended safety and support (ESS) system for people with dementia (pwd) living at home. Results are presented from a Swedish demonstration study (2011-2012) conducted in 24 municipalities.

It is a descriptive intervention study with a pre-post test design. Questionnaires were administered to pwd, carers and professionals at the outset and eight months later. ESS logging data were analyzed.

ESS usage rates varied widely. A total of 650 alerts were triggered, mainly when the pwd was outdoors. Activities were reduced amongst pwd, most likely due to a progression of their disease. Carers noted that pwd were more independent than previously on those occasions when they engaged in outdoor activities. Staff considered that nearly half of pwd could remain living at home due to the ESS, compared with a third amongst carers. In total, 50 per cent of carers felt it was justified to equip their relative with an ESS without their explicit consent, compared to one in eight staff.

A limitation is the amount of missing data and high drop- out rates. Researchers should recruit pwd earlier in their illness trajectory. A mixed-methods approach to data collection is advisable.

Carers played a crucial role in the adoption of ESS. Staff training/supervision about assistive devices and services is recommended.

Overall, use of ESS for pwd living at home was not an ethical problem.

The study included key stakeholder groups and a detailed ethical analysis was conducted.

The purpose of this paper is to explore what existing literature about the care home environment for people with dementia reveals. It also evaluates the implications for practice, to show which parts of the care home environment staff feel have the most impact on the day to day lives of residents living with dementia. In turn, this paper seeks to feedback to care home management to improve practice and to contribute to research in care homes in the future.

A literature review forms the basis of this research, in addition to four semi-structured interview conducted with care home staff of different roles; allowing them to share their experiences with little restriction. Participants were recruited through informal discussions with the researcher before the research took place, as part of her job role and using purposive sampling.

Data were analysed using computer software Nvivo and identified four main categories which all participants discussed: social interaction, staff involvement, staff restrictions, staff involvement and physical elements of the environment. This research has shown the importance of staff presence in the care home environment to facilitate social interaction among residents with dementia.

The sample is very small due to staff not having the time to take part in the interview and this itself is a key finding. Interviews were able to capture feelings but not the overall experience of interaction between resident and staff, which observations would have achieved if there was more time to conduct the research.

A literature review and qualitative research signifying the importance of staff presence in the care home setting in order for the residents to socially engage in their environment. However, it has also show the lack of time that is face by staff and the impact this has on people living with dementia.

The purpose of this paper is to explore whether relatives of care home residents are best placed to act as “champions” or advocates for their family members, as is often the expectation.

Focus groups and interviews were conducted with 25 relatives of residents in four care homes for older people in the South East of England. Two rounds of focus groups were held in each participating care home: the first was to discuss any issues arising from the care received, or concerns about the home itself; the second was to enable a deeper exploration of the key themes that arose from the first round and explore why relatives, in this case, failed to complain.

Thematic analysis revealed a complex range of emotions experienced by relatives that contributed to a conflict between what they believed to be the correct response and how they behaved in reality, which led to a culture of acceptance. Analysis revealed some relatives were reluctant to “interfere” for fear of possible negative repercussions, thus they downplayed issues in an attempt not to “rock the boat”.

This paper discusses the flaws in the policy emphasis on personalisation and the reliance on family members as advocates, and concludes with suggestions on how care homes may foster an environment where relatives, and indeed residents, feel comfortable to raise issues and concerns.

This study aims to contribute to improving quality of life for people with end stage dementia living in residential care settings by investigating the experiences of elderly spouses whose relatives died with end‐stage dementia in nursing homes in both Northern Ireland (NI) and the Republic of Ireland (RoI). A second aim is to develop guidelines for nursing home staff for the delivery of quality care to residents with end stage dementia in residential institutions.

This study had two phases. Phase one involved conducting in‐depth qualitative interviews with spouse caregivers whose relatives had died from dementia in long stay care environments. Phase two entailed incorporating the information gathered through the in‐depth interviews into draft guidelines and disseminating these to a multi‐disciplinary group of health service professionals for their critical appraisal and ratification.

Findings showed that the (EoL) care delivered was deemed by most elderly spouses to be of high quality, with person centred, individual, kind, professional care highly valued. Areas of dissatisfaction noted included poor communication, lack of involvement in key decision making, and poor symptoms control.

Based on the study's findings, guidelines for the delivery of quality care in long stay residential institutions were developed in consultation with eight health service professionals. The authors hope these guidelines will contribute to improvements in the care of people with dementia at end of life and will form the basis for the future development of policy, practices and procedures.

Older people with dementia living in the community are most likely to be cared for by other older people, predominantly spouses, who will be at increased risk of stress‐related health problems themselves. Appropriate support of such carers is crucial if carer breakdown and consequent care‐receiver admission to residential homes is to be avoided. This paper examines the experience of older carers of frail older people with dementia and examines the kind of support that is provided to such carers. In practice, the sole source of professional support received by older people in this study was from community psychiatric nurses (CPNs). CPNs' role did not comprise hands‐on care‐giving and family carers carried out most personal/physical and healthcare tasks themselves, aided in some cases by care workers. The paper concludes by suggesting that lack of support for carers in these activities requires redress.

The purpose of this paper is to review existing literature that addresses involving people with dementia in research, and how this can relate to involving people with dementia in research as co-researchers.

The approach takes the form of a literature review.

Despite a growing drive for patient and public involvement in research, people with dementia are often still excluded from many areas of research, and are rarely given the opportunity to act as co-researchers. Existing principles focussing on how people with dementia can effectively and safely be involved in research as participants (including ethical considerations, enabling participation, support for people with dementia and the involvement of family members and carers) can also be applied to enabling people with dementia to be actively involved with research as co-researchers. The benefits of involving people with dementia in research are also explored.

This paper adds to the small body of literature that addresses involving people with dementia in research as co-researchers, and advocates for ongoing research and development in this area.

The purpose of this paper is to discuss whether the use of outcome-focused homecare improves the subjective well-being of the familial carers of older people with dementia. It also discusses familial carers’ perception of whether this intervention has improved the well-being of their relative.

This qualitative study followed the familial carers of 20 service users suffering from dementia over a six-month period. Semi-structured interviews were undertaken at three intervals during the six months. The carers were asked to assess their subjective well-being at the start, middle and end of the study.

The key findings were that all 20 familial carers expressed an improvement in their subjective well-being and that of their older family member, who appeared more settled as a result of this model of care.

The need to consider the use of outcome-focused care as an intervention strategy for older people living alone in the community. The need to provide supportive environments for the carers of older people with dementia to limit their sense of isolation. The prioritising of outcome-focused care in the most complex and chaotic cases.

This study provides an insight into the effectiveness of outcome-focused homecare with older people experiencing dementia as perceived by their familial carers. Previously, research has established that outcome-focused care increased the subjective well-being of non-dementia sufferers. This study dovetails neatly with this in demonstrating the same effect on dementia sufferers as perceived by their familial carers. Additionally, this study also demonstrated that this model of outcome-focused care also improved the subjective well-being of the familial carers themselves. These finding will help practitioners consider the use of this model of homecare as a potential alternative or a delaying strategy to residential care.