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 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 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 “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 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.

Effectiveness of psychosocial interventions in reducing grief experienced by family carers of people with dementia

2017 ◽  
Vol 15 (3) ◽  
pp. 809-839 ◽  
Author(s):  
Sally Wilson ◽  
Christine Toye ◽  
Samar Aoun ◽  
Susan Slatyer ◽  
Wendy Moyle ◽  
...  
Keyword(s):  
Psychosocial Interventions ◽  
Family Carers ◽  
People With Dementia

scholarly journals Clinical effectiveness of the START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on the cost of care for people with dementia: 6-year follow-up of a randomised controlled trial

2019 ◽  
Vol 216 (1) ◽  
pp. 35-42 ◽  
Author(s):  
Gill Livingston ◽  
Monica Manela ◽  
Aidan O'Keeffe ◽  
Penny Rapaport ◽  
Claudia Cooper ◽  
...  
Keyword(s):  
Health Research ◽  
Psychological Intervention ◽  
Care Home ◽  
Clinical Effectiveness ◽  
Cost Of Care ◽  
Research Centre ◽  
Family Carers ◽  
People With Dementia ◽  
The Impact

BackgroundThe START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective.AimsTo assess the clinical effectiveness over 6 years and the impact on costs and care home admission.MethodWe conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission.ResultsIn total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference −2.00 points, 95% CI −3.38 to −0.63). Patient-related costs (START versus TAU, respectively: median £5759 v. £16 964 in the final year; P = 0.07) and carer-related costs (median £377 v. £274 in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58–1.35).ConclusionsSTART is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers.Declarations of interestG.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.

scholarly journals Occupational therapy for people with dementia and their family carers provided at home: a systematic review and meta-analysis

BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e026308 ◽  
Author(s):  
Sally Bennett ◽  
Kate Laver ◽  
Sebastian Voigt-Radloff ◽  
Lori Letts ◽  
Lindy Clemson ◽  
...  
Keyword(s):  
Systematic Review ◽  
Occupational Therapy ◽  
Psychological Symptoms ◽  
Meta Analysis ◽  
Family Carers ◽  
Moderate Quality ◽  
People With Dementia ◽  
Behavioural And Psychological Symptoms ◽  
Randomised Controlled ◽  
At Home

ObjectiveTo determine the effect of occupational therapy provided at home on activities of daily living, behavioural and psychological symptoms of dementia (BPSD) and quality of life (QOL) for people with dementia, and the effect on family carer burden, depression and QOL.DesignSystematic review and meta-analysis.MethodsEight databases were searched to February 2018. Randomised controlled trials of occupational therapy delivered at home for people with dementia and their family carers that measured ADL, and/or BPSD were included. Two independent reviewers determined eligibility, risk of bias and extracted data.ResultsFifteen trials were included (n=2063). Occupational therapy comprised multiple components (median=8 sessions). Compared with usual care or attention control occupational therapy resulted in improvements in the following outcomes for people with dementia: overall ADL after intervention (standardised means difference (SMD) 0.61, 95% CI 0.16 to 1.05); instrumental ADL alone (SMD 0.22, 95% CI 0.07 to 0.37; moderate quality); number of behavioural and psychological symptoms (SMD −0.32, 95% CI −0.57 to −0.08; moderate quality); and QOL (SMD 0.76, 95% CI 0.28 to 1.24) after the intervention and at follow-up (SMD 1.07, 95% CI 0.58 to 1.55). Carers reported less hours assisting the person with dementia (SMD −0.33, 95% CI −0.58 to −0.07); had less distress with behaviours (SMD −0.23, 95% CI −0.42 to −0.05; moderate quality) and improved QOL (SMD 0.99, 95% CI 0.66 to 1.33; moderate quality). Two studies compared occupational therapy with a comparison intervention and found no statistically significant results. GRADE ratings indicated evidence was very low to moderate quality.ConclusionsFindings suggest that occupational therapy provided at home may improve a range of important outcomes for people with dementia and their family carers. Health professionals could consider referring them for occupational therapy.PROSPERO registration numberCRD42011001166.

scholarly journals Remembering people with dementia during the COVID-19 crisis

2020 ◽  
Vol 3 ◽  
pp. 15 ◽  
Author(s):  
Eamon O'Shea
Keyword(s):  
Family Carers ◽  
Current Crisis ◽  
Department Of Health ◽  
People With Dementia ◽  
Difficult Time ◽  
New Public ◽  
Practical Support ◽  
Health And Social Care ◽  
Information And Communication ◽  
Shared Humanity

This letter argues that we need to pay particular attention to people with dementia during this difficult time of the COVID-19 pandemic. Social distancing rules and cocooning for people aged 70 years and over are now in place in Ireland to slow down the rate of infection and protect vulnerable older people.  This letter argues that we need, more than ever, to assert the personhood of people with dementia at this difficult time. That means more person-centred care and practical support structures for family carers to allow them to continue to care at home in a safe and life-enhancing way. New public broadcasting initiatives could create information and communication channels for people with dementia and their carers, as well as demonstrating empathy and solidarity with their predicament. Government, the Department of Health, the HSE and the voluntary sector have risen to the challenge of COVID-19 in all sectors of society. So too have ordinary citizens. Now we need to unite even more to create an unyielding commitment and adherence to the principles of  decency, justice  and equity in the allocation of scarce  health and social care resources. By doing this, we will demonstrate our caring potential and capacity in a way that reflects our shared humanity, not only in the current crisis, but into the future.

scholarly journals MEDREV: feasibility study of a combined pharmacy–health psychology intervention to improve care for people with dementia with behaviour that challenges in care homes

2019 ◽  
Vol 69 (suppl 1) ◽  
pp. bjgp19X703253
Author(s):  
Ian Maidment
Keyword(s):  
Feasibility Study ◽  
Qualitative Interviews ◽  
Care Home ◽  
Training Session ◽  
Dementia Care ◽  
Training Data ◽  
Care Staff ◽  
Care Homes ◽  
Inappropriate Use ◽  
People With Dementia

Background‘Behaviour that Challenges’ is common in older people with dementia in care homes and treated with antipsychotics. Policy is focused on reducing the use of antipsychotics in people with dementia and therefore reducing harm. This submission reports results on a NIHR-funded feasibility study MEDREV.AimTo assess the feasibility of medication review by a specialist dementia care pharmacist combined with staff training with the objective of limiting the inappropriate use of psychotropics.MethodCare homes were recruited. People meeting the inclusion (dementia; medication for behaviour that challenges), or their personal consultee, were approached. A specialist dementia care pharmacist reviewed medication and made recommendations. Care staff received a 3-hour training session promoting person-centred care and GPs’ brief training. Data were collected on recruitment and retention, and implementation of recommendations. Other outcomes included the Neuropsychiatric Inventory-Nursing Home version, quality of life (EQ-5D/DEMQoL), cognition (sMMSE), and health economic (CSRI). Qualitative interviews explored expectations and experiences.ResultsMedication reviews were conducted in 29 of 34 residents recruited and the pharmacist recommended reviewing medication in 21 of these. Fifteen (71.4%) of these were antidepressants: 57.1% (12 of 21) of recommendations were implemented and implementation took a mean of 98.4 days. Non-implementation themes for will be presented. One hundred and sixty-four care staff received training (care homes = 142; primary care = 22). Twenty-one participants (care home managers = 5; GPs = 3; nurses = 2; care staff = 11) were interviewed.ConclusionThe study was feasible, although the approach would need modification to improve the uptake of reviews and reduce the delay in implementation. Most of the recommendations related to antidepressants.

Sign in / Sign up

Export Citation Format

Share Document