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.

scholarly journals Approaching the end of life and dying with dementia in care homes: the accounts of family carers

2010 ◽  
Vol 20 (2) ◽  
pp. 114-127 ◽  
Author(s):  
J Hennings ◽  
K Froggatt ◽  
J Keady
Keyword(s):  
End Of Life ◽  
Terminal Illness ◽  
Care Home ◽  
Care Homes ◽  
Family Carers ◽  
Home Setting ◽  
Curative Care ◽  
The Family ◽  
Person With Dementia

SummaryResearch into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition.

scholarly journals Mindsong, music therapy and dementia care: collaborative working to support people with dementia and family carers at home

2019 ◽  
Vol 33 (1) ◽  
pp. 16-26 ◽  
Author(s):  
Ruth Melhuish ◽  
Maggie Grady ◽  
Anthea Holland
Keyword(s):  
Music Therapy ◽  
Care Home ◽  
Well Being ◽  
Positive Outcomes ◽  
Challenging Behaviour ◽  
Advanced Dementia ◽  
Family Carers ◽  
Specialist Care ◽  
People With Dementia ◽  
Collaborative Working

Mindsong brings music therapy to people with dementia across Gloucestershire. In 2016, it was part of an innovative co-production project funded by NHS Gloucestershire Clinical Commissioning Group that offered music therapy to people with advanced dementia and ‘challenging’ behaviour. Music therapy was used at times of crisis with couples in the domiciliary setting and the hardest to reach residents at a dementia specialist care home. Positive outcomes included improvements in well-being, mood, engagement and behaviours. Working with client and carer together resulted in increased carer resilience despite complex challenges. Collaborative working maximised results to the benefit of clients and those who care for them. This article focuses on work in the domiciliary setting.

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 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 Art, authenticity and citizenship for people living with dementia in a care home

2021 ◽  
pp. 1-21
Author(s):  
Julian C. Hughes ◽  
Jordan Baseman ◽  
Catherine Hearne ◽  
Mabel Leng Sim Lie ◽  
Dominic Smith ◽  
...  
Keyword(s):  
Grounded Theory ◽  
Cognitive Impairment ◽  
Qualitative Analysis ◽  
Comparative Method ◽  
Care Home ◽  
Participatory Art ◽  
North East ◽  
The North ◽  
Constant Comparative Method ◽  
Participant Observer

Abstract This paper reports on a study which examined the notions of authenticity and citizenship for people living with cognitive impairment or dementia in a care home in the North-East of England. We demonstrated that both notions were present and were encouraged by engagement with an artist, where this involved audio and visual recordings and the creation of a film. The artist's interactions were observed by a non-participant observer using ethnographic techniques, including interviews with the residents, their families and the staff of the care home. The data were analysed using grounded theory and the constant comparative method of qualitative analysis. Our findings suggest that participatory art might help to maintain and encourage authenticity and citizenship in people living with dementia in a care home. Certainly, authenticity and citizenship are notions worth pursuing in the context of dementia generally, but especially in care homes.

scholarly journals Effectiveness–implementation hybrid type 2 study evaluating an intervention to support ‘information work’ in dementia care: an implementation study protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (12) ◽  
pp. e038397
Author(s):  
Chiara De Poli ◽  
Jan R Oyebode ◽  
Christopher Binns ◽  
Richard Glover ◽  
Mara Airoldi
Keyword(s):  
Service Providers ◽  
Unmet Need ◽  
Theory Of Change ◽  
Family Carers ◽  
Long Term Conditions ◽  
Local Service ◽  
Hybrid Type ◽  
North East ◽  
People With Dementia

IntroductionPatients with long-term conditions consistently report a lack of information around services and support available to them. This unmet need for information is significant among people with dementia and family carers. A quality improvement intervention is being carried out to tackle this issue as part of a co-creation initiative in the North East of England (UK). The intervention consists of the dissemination (via the local Community Mental Health Services for Older People) of a leaflet about services available to people with dementia and their family carers in the study site. This protocol is reported in accordance with the Standards for Reporting Implementation Studies.Methods and analysisThis effectiveness–implementation hybrid type 2 study aims at understanding (1) the unfolding and outcomes of the implementation strategy, (2) the outcomes of the intervention (for people with dementia and family carers, staff implementing the intervention and local service providers) and (3) the contribution of co-creation to the design and implementation of the intervention and its outcomes. The prospective theory of change of the intervention articulated by local stakeholders is used as a reference framework against which to assess the implementation and outcomes of the intervention. Evaluation data will be collected through in-depth interviews with people with dementia and family carers receiving the intervention, staff implementing the intervention and managers from local service providers. Referral data from local service providers will be collected to triangulate the interview data. A focus group with key stakeholders will support the sense-making of findings. The realist configuration of mechanism–context–outcome, operationalised using an information behaviour model, will inform data analysis and interpretation.Ethics and disseminationEthical and research governance approvals have been obtained from the West Midlands—South Birmingham Research Ethics Committee. The results of the study will be submitted for publication in peer-reviewed journals and disseminated through conferences.

scholarly journals What Are the Benefits of Pet Ownership and Care Among People With Mild-to-Moderate Dementia? Findings From the IDEAL programme

2020 ◽  
pp. 073346482096261
Author(s):  
Carol Opdebeeck ◽  
Michael A. Katsaris ◽  
Anthony Martyr ◽  
Ruth A. Lamont ◽  
James A. Pickett ◽  
...  
Keyword(s):  
Positive Outcomes ◽  
Pet Ownership ◽  
Active Life ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Self Reports ◽  
Key Factor ◽  
Person With Dementia ◽  
The Ideal

Pet ownership has been associated with positive outcomes in many populations, yet the associations with physical and psychological wellbeing in people with dementia remain unclear. The current study used baseline data from 1,542 people living at home with mild-to-moderate dementia from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Regression analyses investigated associations of pet ownership and pet care with self-reports of walking, loneliness, depression, and quality of life (QoL). After adjusting for covariates, having any pet was associated with higher likelihood of walking over 3 hr in the last week. Those with a dog and who were involved in its care were less likely to be lonely than those with no dog. Having any pet but no involvement in its care was associated with increased depression and decreased QoL compared with those without a pet. The key factor in the associations was involvement in the care of the pet by the person with dementia.

Examining Industrial Clusters from an Ecological Perspective: Evidences from North-East China

2012 ◽  
Vol 13 (2) ◽  
pp. 60-84
Author(s):  
Ge Li ◽  
Ramudu Bhanugopan ◽  
Alan Fish
Keyword(s):  
Differential Equations ◽  
Logistic Model ◽  
Industrial Clusters ◽  
Ecological Perspective ◽  
Positive Outcomes ◽  
Republic Of China ◽  
North East ◽  
The North ◽  
Regional Cluster ◽  
Key Factor

Industrial clusters are increasingly seen as essential in effectively combining, developing and enhancing like-minded businesses. Industrial clusters irrespective of their location are providing positive outcomes for ecological derivatives in supporting effective industrial developments. This perspective is addressed within this paper via employing the ‘Logistic Model of Ecology’; through the application of differential equations. This paper explains key interspecies relationships; competition, predation and symbiosis, operating within a regional cluster in the Jilin Province in the north-east of The Peoples’ Republic of China. The paper draws the conclusion that ‘intense competition’ is the key factor contributing to the successful existence of the cluster.

scholarly journals Exploring good practice in life story work with people with dementia: The findings of a qualitative study looking at the multiple views of stakeholders

Dementia ◽  
2018 ◽  
Vol 19 (2) ◽  
pp. 182-194 ◽  
Author(s):  
Kate Gridley ◽  
Yvonne Birks ◽  
Gillian Parker
Keyword(s):  
Focus Groups ◽  
Life Story ◽  
Good Practice ◽  
Family Carers ◽  
People With Dementia ◽  
Practice Approach ◽  
Story Work ◽  
The Individual ◽  
Person With Dementia ◽  
Design And Methods

Introduction Despite growing international interest in life story work as a tool for person-centred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Design and methods This paper reports the findings from the qualitative element of a larger study looking at the feasibility of evaluating life story work. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants); three with family carers (21 participants); and three with staff, professionals and volunteers with experience of life story work (27 participants). Findings: It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion We produced nine key features of good practice which could be used to guide the life story work process. Key elements include the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person’s life today and look to the future.

Person- and relationship-centred dementia care

2020 ◽  
pp. 233-248
Author(s):  
John Keady ◽  
Mike Nolan
Keyword(s):  
Life Story ◽  
Care Home ◽  
Theoretical Development ◽  
People With Dementia ◽  
Global Issue ◽  
Diagnosis Of Dementia ◽  
Working Together ◽  
The Senses ◽  
Story Work ◽  
Person With Dementia

Dementia is a global issue experienced on an individual and relational level. This chapter traces the emergence of both person-centred care and relationship-centred care, with the latter approach expressed through the Senses Framework. The Framework outlines the theoretical development and practical application of the Senses [security, belonging, continuity, purpose, achievement, significance] and highlights the importance of staff, carer, and [in this chapter] person with dementia all working together. This chapter describes the application of the Senses Framework to a recent practice development study set in a care home for people with dementia and shows how the study used a combination of the Senses and life story work to create an ‘enriched’ environment. The chapter concludes with a discussion about how the Senses can be used to facilitate an early diagnosis of dementia and to help people with dementia and their families to engage with a life ‘outside the front door’, termed ‘The Neighbourhood Space’.

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