scholarly journals MULTIPLE PERSPECTIVES ON WHAT (IF ANY) IS AN OPTIMAL TIME FOR PEOPLE WITH DEMENTIA TO MOVE TO A CARE HOME

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S119-S119
Author(s):  
Kritika Samsi ◽  
Laura Cole ◽  
Jill Manthorpe
Keyword(s):  
Social Workers ◽  
Qualitative Interviews ◽  
Care Home ◽  
Optimal Time ◽  
Family Carers ◽  
Multiple Perspectives ◽  
People With Dementia ◽  
Trade Offs ◽  
Person With Dementia ◽  
At Home

Abstract Deciding an ‘optimal’ time for a person with dementia to move to a care home may be difficult for people with dementia, family carers, and professionals who support them; but there is currently limited evidence to help make this decision. Using phenomenology, we carried out qualitative interviews with 20 family carers, 5 people with dementia, 20 care home managers and 20 social workers, about their experiences, views and attitudes regarding timing of a move to a care home. Social workers indicated that managing risks and safety of person with dementia living in their own home were paramount when considering where person with dementia should live. These concerns included mishandling gas and electrical equipment at home, wandering and getting lost outside, and breakdown of family care. They and care home managers valued wishes of the person with dementia, and minimising any emotional distress to them when a move did come about. Family carers reported feeling stressed, and guilty around decision-making and ultimate move of their relative to a care home. Many described weighing up various risks when reaching ‘tipping point’ and making trade-offs between available options or uncertain future choices. Participants with dementia recognised they had struggled to cope at home and needed more support; however, many found the move difficult as they relocated nearer to family, away from their home and friends, and resigned themselves to less independence. Most people with dementia reported that their carers initiated discussions about timing of move, and that family discussions about this were common.

scholarly journals “I just keep thinking that I don’t want to rely on people.” a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Penny Rapaport ◽  
Alexandra Burton ◽  
Monica Leverton ◽  
Ruminda Herat-Gunaratne ◽  
Jules Beresford-Dent ◽  
...  
Keyword(s):  
Risk Taking ◽  
Qualitative Interviews ◽  
Care Home ◽  
Psychosocial Interventions ◽  
Family Carers ◽  
Community Connectedness ◽  
Stakeholder Perspectives ◽  
People With Dementia ◽  
Health And Social Care ◽  
At Home

Abstract Background Most people living with dementia want to remain in their own homes, supported by family and paid carers. Care at home often breaks down, necessitating transition to a care home and existing interventions are limited. To inform the development of psychosocial interventions to enable people with dementia to live well for longer at home, we qualitatively explored the views of people living with dementia, family carers and health and social care professionals, on how to achieve and maintain independence at home and what impedes this. Methods We conducted an inductive thematic analysis of qualitative interviews with 11 people living with dementia, 19 professionals and 22 family carers in England. Results We identified four overarching themes: being in a safe and familiar environment, enabling not disabling care, maintaining relationships and community connectedness, and getting the right support. For people living with dementia, the realities of staying active were complex: there was a tension between accepting support that enabled independence and a feeling that in doing so they were accepting dependency. Their and professionals’ accounts prioritised autonomy and ‘living well with dementia’, while family carers prioritised avoiding harm. Professionals promoted positive risk-taking and facilitating independence, whereas family carers often felt they were left holding this risk. Discussion Psychosocial interventions must accommodate tensions between positive risk-taking and avoiding harm, facilitating autonomy and providing support. They should be adaptive and collaborative, combining self-management with flexible support. Compassionate implementation of rights-based dementia care must consider the emotional burden for family carers of supporting someone to live positively with risk.

scholarly journals “In the Bengali Vocabulary, There Is No Such Word as Care Home”:Caring Experiences of UK Bangladeshi and Indian Family Carers of People Living With Dementia at Home

2019 ◽  
Author(s):  
Ruminda Herat-Gunaratne ◽  
Claudia Cooper ◽  
Naaheed Mukadam ◽  
Penny Rapaport ◽  
Monica Leverton ◽  
...  
Keyword(s):  
Care Home ◽  
Care Recipient ◽  
Family Carers ◽  
Structured Interviews ◽  
Indian Family ◽  
People With Dementia ◽  
Care Family ◽  
Care Models ◽  
Design And Methods ◽  
At Home

Abstract Background and Objectives We aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers’ understanding of, and attitudes to dementia, we explored how carers’ cultural identities and values influenced their experiences, negotiation of the caring role and relationship with services. Research Design and Methods We conducted semi-structured interviews with 10 Bangladeshi and Indian family carers of people living with dementia at home. We recruited participants from community settings in London and Bradford, UK. Interviews were audio recorded, transcribed and thematically analyzed. Results We identified 4 themes: an expectation and duty to care, expectation and duty as a barrier to accessing formal care (family carer reluctance, care recipient reluctance, and service organization), culturally (in)sensitive care, and the importance of support from informal care networks. Discussion and Implications Interviewees described tensions between generations with different understandings of familial care obligations. Expectations to manage led to burden and guilt, and the cost of caring, in terms of lost employment and relationships was striking. Unlike in previous studies, interviewees wanted to engage and be supported by services, but were frequently offered care models they could not accept. There was a tension between a state-provided care system obliged to provide care when there are no alternatives, and family carers who feel a duty to always provide alternatives. Informal social networks often provided valued support.

scholarly journals Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups

BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e050066
Author(s):  
Emily West ◽  
Pushpa Nair ◽  
Yolanda Barrado-Martin ◽  
Kate R Walters ◽  
Nuriye Kupeli ◽  
...  
Keyword(s):  
Qualitative Interviews ◽  
Family Carers ◽  
Multiple Perspectives ◽  
Daily Lives ◽  
People With Dementia ◽  
Minority Ethnic Groups ◽  
Fear And Anxiety ◽  
The Uk ◽  
The Impact ◽  
Minority Ethnic

IntroductionDespite community efforts to support and enable older and vulnerable people during the COVID-19 pandemic, many people with dementia and their family carers are still finding it difficult to adjust their daily living in light of the disruption that the pandemic has caused. There may be needs specific to black, Asian and minority ethnic (BAME) populations in these circumstances that remain thus far unexplored.ObjectiveThe aim of the study was to explore the effects of the COVID-19 pandemic on people living with dementia and their family carers of BAME backgrounds, in relation to their experiences of community dementia care and the impact on their daily lives.Design15 participants (persons with dementia and carers) were recruited for semistructured qualitative interviews. Respondents were of South Asian and Afro-Caribbean backgrounds. We used thematic analysis to analyse our data from a constructivist perspective, which emphasises the importance of multiple perspectives, contexts and values.ResultsThere were a number of ways that the COVID-19 pandemic has impacted BAME persons with dementia and carers with regard to their experiences of dementia community care and the impact on their everyday lives. In particular we identified eight key themes, with subthemes: fear and anxiety, food and eating (encompassing food shopping and eating patterns), isolation and identity, community and social relationships, adapting to COVID-19, social isolation and support structures, and medical interactions. Fear and anxiety formed an overarching theme that encompassed all others.DiscussionThis paper covers unique and underexplored topics in a COVID-19-vulnerable group. There is limited work with these groups in the UK and this is especially true in COVID-19. The results showed that such impacts were far-reaching and affected not only day-to-day concerns, but also care decisions with long-ranging consequences, and existential interests around fear, faith, death and identity.

scholarly journals Is there an “optimal time” to move to a care home for a person with dementia? A systematic review of the literature

2018 ◽  
Vol 30 (11) ◽  
pp. 1649-1670 ◽  
Author(s):  
Laura Cole ◽  
Kritika Samsi ◽  
Jill Manthorpe
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
English Language ◽  
Reference Lists ◽  
Care Home ◽  
Decision Time ◽  
Optimal Time ◽  
Family Carers ◽  
Inclusion Criteria ◽  
Person With Dementia

ABSTRACTBackground:There is limited evidence regarding how the decision evolves about whether and when it is best for a person with dementia to move to a care home. The factors leading to the timing of the decision remain particularly unclear. This systematic review of existing literature aims to gain an understanding of the decision-making timing and process to distinguish the drivers of these decisions, and to identify if there is an “optimal” or best time (if any) for a person with dementia to move to a care home.Methods:Six English language electronic databases were searched up to the end of 2016, along with included papers’ reference lists. Papers were screened against the inclusion criteria and rated for quality. Extracted data were thematically analyzed.Results:The review identified 16 relevant papers. Seven themes were identified: (1) what happened before the move; (2) planning for the move, (3) weighing up the decision, (4) lack of support, (5) drivers of the decision, (6) emotional significance of the move, and (7) continued reflection on the decision. “Time” of the move was largely absent from much of the literature, although inferences were made. Overall, the decision-making process appeared to be cyclic, with family carers constantly re-evaluating when might be the time to make the move with some continuing to reflect on this even subsequently.Conclusions:Further research is required to understand the “optimal” or best time (if any) for when a person with dementia moves to a care home, and how to determine when someone is ready to move.

scholarly journals Namaste care in the home setting: developing initial realist explanatory theories and uncovering unintended outcomes

BMJ Open ◽  
2020 ◽  
Vol 10 (1) ◽  
pp. e033046
Author(s):  
Sonia Michelle Dalkin ◽  
Monique Lhussier ◽  
Nicola Kendall ◽  
Joanne Atkinson ◽  
Sharron Tolman
Keyword(s):  
Care Home ◽  
Care Program ◽  
Holistic Approach ◽  
Positive Outcomes ◽  
Family Carers ◽  
Home Setting ◽  
North East ◽  
The North ◽  
People With Dementia ◽  
Person With Dementia

IntroductionThe End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a ‘shell’; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia. Previously used in care homes, this study is the first to explore the pioneering use of Namaste Care in people’s own homes.ObjectiveTo develop initial programme theories detailing if, how and under which circumstances Namaste Care works when implemented at home.DesignA qualitative realist approach following the RAMESES II guidelines was employed to understand not only whether Namaste Care has positive outcomes, but also how these are generated, for whom they happen and in which circumstances.SettingA hospice in the North East of England, operating in the community, through volunteers.ParticipantsProgramme theories were developed from three focus groups with volunteers implementing Namaste Care (n=8; n=8; n=11) and eight interviews with family carers (n=8).ResultsFour refined explanatory theories are presented: increasing engagement, respite for family carers, importance of matched volunteers and increasing social interaction. It was identified that while Namaste Care achieved some of the same goals in the home setting as it does in the care home setting, it could also function in a different way that promoted socialisation.ConclusionsNamaste Care provides holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In the present study carers often chose to use Namaste Care sessions as respite. This was often linked to their frustration of the unavoidable dominance of task-focussed care in daily life. Individualised Namaste Care activities thus led to positive outcomes for both those with dementia and their carers.

New relationships and intimacy in long-term care: The views of relatives of residents with dementia and care home staff

Dementia ◽  
2016 ◽  
Vol 17 (4) ◽  
pp. 405-422 ◽  
Author(s):  
Esther Wiskerke ◽  
Jill Manthorpe
Keyword(s):  
Qualitative Interviews ◽  
Care Home ◽  
Care Homes ◽  
Sexual Intimacy ◽  
Term Care ◽  
Care Home Staff ◽  
General Terms ◽  
People With Dementia ◽  
The Moment ◽  
Person With Dementia

Background There is limited research on what family members and frontline care home staff consider to be the best responses to the sexual expression of a person with dementia, whilst at the same time respecting relatives’ feelings, managing their possible distress and conflict. Methods This exploratory study investigated the views of relatives and care workers of new relationships or sexual intimacy between care home residents with dementia, whilst still married to another person. It reports the themes that emerged in qualitative interviews with eight relatives of people with dementia and with 12 frontline care home staff working in two English care homes. Interviews took place in 2015 using a hypothetical vignette that unfolded in four stages. Thematic analysis was used to analyse the data. Findings The views of care home staff and relatives had similarities in general terms regarding the problems arising around expressions of sexuality in care homes: indicting that a light-hearted or non-physical connection between residents is deemed acceptable, but the moment it becomes a sexual relationship then decision making becomes more complicated. Staff were inclined to turn to managers for advice and to consider separating residents. They expressed familiarity with distracting residents from situations that were of concern. Relatives were considerate of the difficulties and dilemmas faced by care home staff. Conclusion The use of a vignette facilitated discussion of a potentially sensitive topic. Areas for further research are identified.

scholarly journals Caring for One’s Wife With Dementia—at Home: Older Husbands’ Experiences With Managing Challenges of Everyday Life

SAGE Open ◽  
2019 ◽  
Vol 9 (1) ◽  
pp. 215824401983445
Author(s):  
Linda Rykkje ◽  
Oscar Tranvåg
Keyword(s):  
Health Care ◽  
Health Care Services ◽  
Qualitative Interviews ◽  
Care Services ◽  
People With Dementia ◽  
Memory Clinics ◽  
Male Caregivers ◽  
Caregiving Roles ◽  
Caregiver Role ◽  
At Home

More than 80,000 Norwegians live with dementia. Most caregivers for people with dementia are spouses, and women outnumber men. Due to an aging population, and women’s higher risk of dementia as well as men’s increased life expectancy, the number of male caregivers will rise. There are some differences in the caregiving roles of men and women. Research suggest that males report lower burden and depression than female caregivers, but some men struggle to adjust to the caregiver role, and men are less likely to access health care services. The aim of this study is to explore the experiences of husbands engaged in caregiving for their home-dwelling spouse with dementia. This knowledge will add to the growing body of research about men in the context of dementia care and may raise gender awareness. The method is qualitative interviews with hermeneutical interpretation. The participants are five husbands recruited from two Hospital Memory Clinics in Norway. The results portray how the husbands managed their everyday challenges, and how they adapted to changes, experiences of loss and bereavement, and how they redefined personal freedom and expanded their responsibilities. Acknowledging the rewards of caregiving, the husbands found their life meaningful and they were thriving in their caregiving role. Health care personnel should recognize and respect the challenging life situation caregiving husbands may experience, calling for personnel to learn from, care for, and collaborate with them, enabling the couple to live a meaningful life together at home as long as possible.

scholarly journals 409 - Trends in Involvement, Perceived Role, Role Overload and Self-efficacy of Family Carers of People with Dementia in Care Homes

2020 ◽  
Vol 32 (S1) ◽  
pp. 125-125
Author(s):  
Marleen Prins ◽  
Bernadette Willemse ◽  
Marlous Tuithof ◽  
Henriëtte van der Roest ◽  
Anne Margriet Pot
Keyword(s):  
Self Efficacy ◽  
Care Home ◽  
Care Homes ◽  
Role Overload ◽  
Family Carers ◽  
Change Over Time ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care ◽  
Over Time

IntroductionThe quality of long-term care provided to people with dementia (PwD) in care homes can be improved by implementing person-centered care. Family carers of PwD living in care homes are an important part of person-centered care. However, they often experience high levels of burden, even when a family member with dementia lives in a care home. This study examines trends in the involvement of family carers and their perceived role, role overload and self-efficacy.MethodsData from the Living Arrangements for People with Dementia study, a cross-sectional monitoring study that evaluates developments in care for PwD in care homes in the Netherlands, with four measurement cycles between 2008-2017 was used. Data from the three most current measurement cycles were used, with respectively 144, 47 and 49 participating care homes and 888, 392 and 401 participating family carers. Family involvement was measured by the number of hours per week that family carers visited the PwD and the type of activities they undertook. Perceived caregiving role was measured with the Family Perceptions of Caregiving Role instrument. We used the Self-Perceived Pressure by Informal Care to measure role overload and a 37-item questionnaire was used to measure self-efficacy. We investigated the changes over time (e.g., measurement cycles) of these measures.ResultsThe number of hours that family carers visited the PwD did not change over time. However, there was a trend towards an increase in the variety of activities they undertook. Their perceived caregiving role did not change over time. Self-efficacy of family carers increased over time and they reported more feelings of role overload.ConclusionsDuring the past decade, there has been an increasing trend towards family carers doing more diverse activities with PwD in carer homes. Family carers did feel more competent in their caring role, although their feelings of role overload also increased. Continuing attention is therefore needed for the psychological well-being of family carers after a person with dementia moves to a care home.

scholarly journals Seeing the collective: family arrangements for care at home for older people with dementia

2018 ◽  
Vol 39 (06) ◽  
pp. 1200-1218 ◽  
Author(s):  
CHRISTINE CECI ◽  
HOLLY SYMONDS BROWN ◽  
MARY ELLEN PURKIS
Keyword(s):  
Family Care ◽  
High Volume ◽  
Ethnographic Study ◽  
Family Carers ◽  
Care Giving ◽  
People With Dementia ◽  
Home Based ◽  
Health And Social Care ◽  
Care At Home ◽  
At Home

ABSTRACTWith the predicted growth in the number of people with dementia living at home across the globe, the need for home-based care is expected to increase. As such, it will be primarily family carers who will provide this crucial support to family members. Designing appropriate support for family carers is thus essential to minimise risks to their health, to prevent premature institutionalisation or poor care for persons with dementia, as well as to sustain the effective functioning of health and social care systems. To date, the high volume of research related to care at home and acknowledged low impact of interventions suggests that a re-examination of the nature of care at home, and how we come to know about it, is necessary if we are to advance strategies that will contribute to better outcomes for families. This paper describes findings from an ethnographic study that was designed to support an analysis of the complexity and materiality of family care arrangements – that is, the significance of the actual physical, technological and institutional elements shaping care-giving situations. In this paper, we describe the arrangements made by one family to show the necessary collectivity of these arrangements, and the consequences of the formal care system's failure to respond to these.

scholarly journals Differences in assistive technology installed for people with dementia living at home who have wandering and safety risks

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Eleanor Curnow ◽  
Robert Rush ◽  
Sylwia Gorska ◽  
Kirsty Forsyth
Keyword(s):  
Assistive Technology ◽  
Selection Process ◽  
Living Situation ◽  
Caregiver Support ◽  
People With Dementia ◽  
Multiple Characteristics ◽  
Person Characteristics ◽  
Person With Dementia ◽  
The Impact ◽  
At Home

Abstract Background Assistive Technology for people with dementia living at home is not meeting their care needs. Reasons for this may be due to limited understanding of variation in multiple characteristics of people with dementia including their safety and wandering risks, and how these affect their assistive technology requirements. This study therefore aimed to explore the possibility of grouping people with dementia according to data describing multiple person characteristics. Then to investigate the relationships between these groupings and installed Assistive Technology interventions. Methods Partitioning Around Medoids cluster analysis was used to determine participant groupings based upon secondary data which described the person characteristics of 451 people with dementia with Assistive Technology needs. Relationships between installed Assistive Technology and participant groupings were then examined. Results Two robust clustering solutions were identified within the person characteristics data. Relationships between the clustering solutions and installed Assistive Technology data indicate the utility of this method for exploring the impact of multiple characteristics on Assistive technology installations. Living situation and caregiver support influence installation of assistive technology more strongly than level of risk or cognitive impairment. People with dementia living alone received different AT from those living with others. Conclusions Results suggest that caregiver support and the living situation of the person with dementia influence the type and frequency of installed Assistive Technology. Reasons for this include the needs of the caregiver themselves, the caregiver view of the participants’ needs, caregiver response to alerts, and the caregiver contribution to the assistive technology assessment and selection process. Selection processes should be refined to account for the needs and views of both caregivers and people with dementia. This will require additional assessor training, and the development of validated assessments for people with dementia who have additional impairments. Policies should support the development of services which provide a wider range of AT to facilitate interventions which are focused on the needs of the person with dementia.

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