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.

Trajectories of care home residents during the last month of life: the case of France

2015 ◽  
Vol 37 (2) ◽  
pp. 325-351 ◽  
Author(s):  
SOPHIE PENNEC ◽  
JOELLE GAYMU ◽  
ELISABETH MORAND ◽  
FRANCOISE RIOU ◽  
SILVIA PONTONE ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Older Persons ◽  
Care Home ◽  
Care Homes ◽  
Old People ◽  
Fin De Vie ◽  
People With Dementia ◽  
Two Factors

ABSTRACTThis paper examines some demographic and medical factors associated with the likelihood of residing in a care home during the last month of life for persons aged 70 and over in France and, if so, of remaining in the care home throughout or being transferred to hospital. The data are from the Fin de vie en France (End of Life in France) survey undertaken in 2010. During the last month of life, very old people are more likely to be living in a care home but are not less likely to be transferred to hospital. Medical conditions and residential trajectories are closely related. People with dementia or mental disorders are more likely to live in a care home and, if so, to stay there until they die. Compared to care homes, a more technical and medication-based approach is taken in hospitals and care home residents who are transferred to hospital more often receive medication while those remaining in care homes more often receive support from a psychologist. In hospitals as in care homes, few older persons had recourse to advance directives and hospice programmes were not widespread. Promoting these two factors may help to increase the quality of end of life and facilitate an ethical approach to end-of-life care.

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 Personality and Dementia: an Approach to Differential Profile of the Caregiver

2011 ◽  
Vol 1 (3) ◽  
pp. 85-94
Author(s):  
Elena de Andrés-Jiménez ◽  
Rosa Mª Limiñana-Gras ◽  
Encarna Fernández-Ros
Keyword(s):  
Relevant Information ◽  
Personality Profile ◽  
Family Carers ◽  
Psychological Variables ◽  
People With Dementia ◽  
The Family ◽  
Study Population ◽  
The One ◽  
The Impact

The aim of this study is to determine the existence of a characteristic personality profile of family carers of people with dementia. The correct knowledge and use of psychological variables which affect the carer, helps to promote appropriate actions to mitigate the impact of care and improve the carer’s quality of life and likewise the one of the person cared for. The study population consists of 69 family carers of people with dementia, members of various associations and care centers. The results allow us to identify a characteristic personality profile for these carers and it reveals a specific psychological working in this sample, although we cannot directly relate it with the tasks of caring for people with this disease, this profile gives us very relevant information to pay more attention to the needs of this group. Moreover, the analysis of personality styles depends on the sex of the family carer, showing, once again, that the woman is in a situation of most vulnerability.

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 Psychometric properties and feasibility of use of dementia specific quality of life instruments for use in care settings: a systematic review

2019 ◽  
pp. 1-15 ◽  
Author(s):  
Laura J. Hughes ◽  
Nicolas Farina ◽  
Thomas E. Page ◽  
Naji Tabet ◽  
Sube Banerjee
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Psychometric Properties ◽  
Care Home ◽  
Care Homes ◽  
Cosmin Checklist ◽  
Many Instruments ◽  
The Uk ◽  
Quality Instruments

ABSTRACTBackground:Over 400,000 people live in care home settings in the UK. One way of understanding and improving the quality of care provided is by measuring and understanding the quality of life (QoL) of those living in care homes. This review aimed to identify and examine the psychometric properties including feasibility of use of dementia-specific QoL measures developed or validated for use in care settings.Design:Systematic review.Methods:Instruments were identified using four electronic databases (PubMed, PsycINFO, Web of Science, and CINAHL) and lateral search techniques. Searches were conducted in January 2017. Studies which reported on the development and/or validation of dementia specific QoL instruments for use in care settings written in English were eligible for inclusion. The methodological quality of the studies was assessed using the COSMIN checklist. Feasibility was assessed using a checklist developed specifically for the review.Results:Six hundred and sixteen articles were identified in the initial search. After de-duplication, screening and further lateral searches were performed, 25 studies reporting on 9 dementia-specific QoL instruments for use in care home settings were included in the review. Limited evidence was available on the psychometric properties of many instruments identified. Higher-quality instruments were not easily accessible or had low feasibility of use.Conclusions:Few high-quality instruments of QoL validated for use in care home settings are readily or freely available. This review highlights the need to develop a well-validated measure of QoL for use within care homes that is also feasible and accessible.

scholarly journals Optimisation of dementia care in care homes: Dementia care framework (innovative practice)

Dementia ◽  
2017 ◽  
Vol 19 (4) ◽  
pp. 1316-1324
Author(s):  
Claire Royston ◽  
Gary Mitchell ◽  
Colin Sheeran ◽  
Joanne Strain ◽  
Sue Goldsmith
Keyword(s):  
Care Home ◽  
Evidence Base ◽  
Dementia Care ◽  
Care Homes ◽  
Spiritual Needs ◽  
Four Seasons ◽  
Care Partners ◽  
The Uk ◽  
Robust Evidence

There are an increasing number of people living with dementia in care home settings. Recent reports suggest that people who deliver care to residents living with dementia in care homes require specialist support to provide optimum care. To address this need Four Seasons Health Care, the largest provider of care homes within the UK today, sought to design a dementia care framework that enhanced the quality of life for people living with dementia in their care homes. The framework was designed using a robust evidence base, engagement with people living with dementia, their care partners, policy-writers, multidisciplinary professionals and people within the organisation. This paper describes the methodology behind the dementia care framework and outcomes data from the first phase (of 20 care homes that included the care of 451 people living with dementia). The main outcome was a significant improvement in the quality of the lives of residents across biological, psychological, social and spiritual needs.

scholarly journals Key Components for the Delivery of Palliative and End-of-Life Care in Care Homes in Hong Kong: A Modified Delphi Study

2022 ◽  
Vol 19 (2) ◽  
pp. 667
Author(s):  
Helen Yue-Lai Chan ◽  
Cecilia Nim-Chee Chan ◽  
Chui-Wah Man ◽  
Alice Dik-Wah Chiu ◽  
Faith Chun-Fong Liu ◽  
...  
Keyword(s):  
Palliative Care ◽  
Hong Kong ◽  
End Of Life ◽  
Delphi Study ◽  
End Of Life Care ◽  
Care Home ◽  
Local Context ◽  
Life Care ◽  
Home Setting ◽  
Modified Delphi

Integrating the palliative care approach into care home service to address the complex care needs of older adults with frailty or advanced diseases has been increasingly recognized. However, such a service is underdeveloped in Hong Kong owing to socio-cultural and legal concerns. We adopted a modified Delphi study design to identify the key components for the delivery of palliative and end-of-life care in care home settings for the local context. It was an iterative staged method to assimilate views of experts in aged care, palliative care, and care home management. A multidisciplinary expert panel of 18 members consented to participate in the study. They rated their level of agreement with 61 candidate statements identified through a scoping review in two rounds of anonymous surveys. The steering group revised the statements in light of the survey findings. Eventually, the finalized list included 28 key statements concerning structure and process of care in seven domains, namely policy and infrastructure, education, assessment, symptom management, communication, care for dying patients, and family support. The findings of this study underscored concerns regarding the feasibility of statements devised at different levels of palliative care development. This list would be instrumental for regions where the development of palliative and end-of-life care services in care home setting is at an initial stage.

Views of family carers to the future accommodation and support needs of their relatives with intellectual disabilities

2006 ◽  
Vol 23 (4) ◽  
pp. 140-144 ◽  
Author(s):  
Roy McConkey ◽  
Jayne McConaghie ◽  
Owen Barr ◽  
Paul Roberts
Keyword(s):  
Intellectual Disabilities ◽  
Living Arrangements ◽  
Service Planning ◽  
Support Needs ◽  
Family Carers ◽  
Individual Interviews ◽  
Supported Accommodation ◽  
The Family ◽  
People With Intellectual Disabilities

AbstractObjectives: The demand for places in supported accommodation is likely to rise due to the increasing longevity of people with intellectual disabilities and as their parents become unavailable or unable to care for them. However few attempts have been made to ascertain carer's views on alternative accommodation.Method: Four studies were undertaken in Northern Ireland to ascertain carer's views using three different methods. In all, 387 carers participated with the response being greatest for individual interviews conducted in the family home and least for self-completed questionnaires and attendance at group meetings.Results: The majority of carers envisaged the person continuing to be cared for within the family. The most commonly chosen out-of-home provision was in residential or nursing homes, living with support in a house of their own and in homes for small groups of people. Few carers chose living with another family. However only small numbers of carers envisaged alternative provision being needed in the next two years and few had made any plans for alternative living arrangements.Conclusions: The implications for service planning are noted, primarily the need for individual reviews of future needs through person-centred planning; improved information to carers about various residential options and their differential benefits, along with more services aimed at improving the quality of life of people living with family carers. These need to be underpinned by a commitment of statutory agencies to partnership working with family carers. The implications for mental health services are noted.

Exploring caregivers' perspectives on improving care for older people at the end of life in Thailand

2019 ◽  
Vol 25 (7) ◽  
pp. 326-332
Author(s):  
Kanyanat Supaporn ◽  
Sang-arun Isaramalai ◽  
Wandee Suttharangsee
Keyword(s):  
Quality Of Care ◽  
Older People ◽  
End Of Life ◽  
Care Quality ◽  
Ageing Population ◽  
Home Setting ◽  
Experience Of Care ◽  
Care Recipients ◽  
Care For Older People

Background: Older people in Thailand receive general medical and social care at the end of life, and many rarely access palliative services. In light of this, improving the quality of care for the ageing population relies on addressing the needs of family caregivers, who provide the majority of care in a home setting. Understanding caregivers' perspectives when caring for a friend or relative will help to improve the quality of care that they provide. Aim: To explore caregivers' perspectives on improving care for older people in Thailand in the palliative stage. Methods: A qualitative study using in-depth interviews and observation of 10 older people in the palliative stage and their caregivers was undertaken. Data were analysed using content analysis. Findings: Data analysis revealed three themes: caregivers cared to repay the older person's previous kindness, caregivers cared and changed their caregiving behaviour to minimise the older person's perception of being abandoned or being a burden, and to follow Thai ancestral traditions, so that the older person could die peacefully. Conclusion: This study provides specific instructions for those who provide care for older Thai people in the palliative stage. Finding ways to address caregivers' perspectives on improving care quality could enhance the experience of care recipients.

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