Hanging on to Some Autonomy in Decisionmaking: How do Spouse Carers Support this?

Dementia ◽  
2016 ◽  
Vol 18 (4) ◽  
pp. 1219-1236 ◽  
Author(s):  
Deirdre Fetherstonhaugh ◽  
Jo-Anne Rayner ◽  
Laura Tarzia
Keyword(s):  
Decision Making ◽  
Informal Care ◽  
Face To Face ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Person With Dementia

In Australia, the majority of people with dementia live in the community with informal care provided by family, commonly a spouse. A diagnosis of dementia is a threat to one’s personhood and is often accompanied by perceptions of future dependency, which will involve the inability to carry out conventional roles and complete everyday tasks including making decisions. Being able to make decisions, however, is part of being a ‘person’ and it is through relationships that personhood is defined and constructed. In face-to-face interviews with seven couples (a carer and person with dementia dyad) and two spouse carers, this study explored why, and how, spouse carers support continued involvement in decision-making for people with dementia. The findings highlight the importance of loving and respectful relationships in the development of strategies to support continued decision-making for people with dementia.

scholarly journals The challenges of shared decision making in dementia care networks

2016 ◽  
Vol 30 (6) ◽  
pp. 843-857 ◽  
Author(s):  
Leontine Groen-van de Ven ◽  
Carolien Smits ◽  
Marijke Span ◽  
Jan Jukema ◽  
Krista Coppoolse ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Dementia Care ◽  
Social Health ◽  
Shared Decision ◽  
Care Network ◽  
Face To Face ◽  
People With Dementia ◽  
Interview Guide ◽  
Person With Dementia

ABSTRACTBackground:Decision making is an important part of managing one's life with dementia. Shared decision making is the preferred way of involving people in decisions. Our study aimed to describe the challenges of shared decision making in dementia care networks.Methods:A multi-perspective qualitative study using face-to-face interviews with 113 respondents in 23 care networks in the Netherlands consisting of 23 people with dementia, 44 of their informal caregivers, and 46 of their professional caregivers. The interview guide addressed the decision topics, who were involved in the decision making and their contributions to the decision making. We used content analysis to delineate categories and themes.Results:The themes and categories that emerged are: (1) adapting to a situation of diminishing independence, which includes the continuous changes in the care network, resulting in shifting decision-making roles and the need for anticipating future decisions; and (2) tensions in network interactions which result from different perspectives and interests and which require reaching agreement about what constitutes a problem by exchanging information in the care network.Conclusion:The challenges in dementia care networks relate to all dimensions of social health. They have implications for a model of shared decision making in dementia care networks. Such a model requires flexibility regarding changing capabilities to preserve the autonomy of the person with dementia. It needs working towards a shared view about what constitutes a problem in the situation. It asks for professionals to advocate for the involvement of people with dementia by helping them participate in ways that strengthen their remaining capacities.

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’.

scholarly journals “What Bothers Me Most Is the Disparity between the Choices that People Have or Don’t Have”: A Qualitative Study on the Health Systems Responsiveness to Implementing the Assisted Decision-Making (Capacity) Act in Ireland

2020 ◽  
Vol 17 (9) ◽  
pp. 3294 ◽  
Author(s):  
Éidín Ní Shé ◽  
Deirdre O’Donnell ◽  
Sarah Donnelly ◽  
Carmel Davies ◽  
Francesco Fattori ◽  
...  
Keyword(s):  
Decision Making ◽  
Older People ◽  
Healthcare System ◽  
Health Systems ◽  
Critical Incident ◽  
Family Carers ◽  
Acute Setting ◽  
Face To Face ◽  
Health And Social Care ◽  
Diagnosis Of Dementia

Objective: The Assisted Decision-Making (ADM) (Capacity) Act was enacted in 2015 in Ireland and will be commenced in 2021. This paper is focused on this pre-implementation stage within the acute setting and uses a health systems responsiveness framework. Methods: We conducted face-to-face interviews using a critical incident technique. We interviewed older people including those with a diagnosis of dementia (n = 8), family carers (n = 5) and health and social care professionals (HSCPs) working in the acute setting (n = 26). Results: The interviewees reflected upon a healthcare system that is currently under significant pressures. HSCPs are doing their best, but they are often halted from delivering on the will and preference of their patients. Many older people and family carers feel that they must be very assertive to have their preferences considered. All expressed concern about the strain on the healthcare system. There are significant environmental barriers that are hindering ADM practice. Conclusions: The commencement of ADM provides an opportunity to redefine the provision, practices, and priorities of healthcare in Ireland to enable improved patient-centred care. To facilitate implementation of ADM, it is therefore critical to identify and provide adequate resources and work towards solutions to ensure a seamless commencement of the legislation.

scholarly journals Recruiting hard to reach populations to studies: breaking the silence: an example from a study that recruited people with dementia

BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e030829
Author(s):  
Becky Field ◽  
Gail Mountain ◽  
Jane Burgess ◽  
Laura Di Bona ◽  
Daniel Kelleher ◽  
...  
Keyword(s):  
Secondary Analysis ◽  
Future Research ◽  
Specific Population ◽  
Research Experiences ◽  
Multiple Strategies ◽  
Successful Recruitment ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Hard To Reach Populations ◽  
Person With Dementia

ObjectiveTo share the challenges of recruiting people with dementia to studies, using experiences from one recently completed trial as an exemplar.BackgroundResearch publications always cite participant numbers but the effort expended to achieve the sample size is rarely reported, even when the study involved recruiting a hard to reach population. A multisite study of a psychosocial intervention for people with dementia illustrates the challenges. This study recruited 468 ‘dyads’ (a person with dementia and a family carer together) from 15 sites but the time taken to achieve this was longer than originally estimated. This led to a study extension and the need for additional sites. Recruitment data revealed that certain sites were more successful than others, but why? Can the knowledge gained be used to inform other studies?MethodsSecondary analysis of routinely collected recruitment data from three purposefully selected sites was examined to understand the strategies used and identify successful approaches.FindingsAt all three sites, the pool of potential recruits funnelled to a few participants. It took two sites 18 months longer than the third to achieve recruitment numbers despite additional efforts. Explanations given by potential participants for declining to take part included ill health, reporting they were ‘managing’, time constraints, adjusting to a diagnosis of dementia and burden of study procedures.ConclusionsSuccessful recruitment of people with dementia to studies, as one example of a hard to reach group, requires multiple strategies and close working between researchers and clinical services. It requires a detailed understanding of the needs and perspectives of the specific population and knowledge about how individuals can be supported to participate in research. Experiences of recruitment should be disseminated so that knowledge generated can be used to inform the planning and implementation of future research studies.

After the care journey: exploring the experiences of family carers of people living with dementia

2019 ◽  
Vol 40 (11) ◽  
pp. 2429-2447 ◽  
Author(s):  
Sonja Jameson ◽  
Lynne Parkinson ◽  
Annie Banbury
Keyword(s):  
Psychological Health ◽  
Family Care ◽  
Health Issues ◽  
Face To Face ◽  
Telephone Interviews ◽  
Care Givers ◽  
People With Dementia ◽  
Number Of Factors ◽  
Person With Dementia ◽  
Primary Family

AbstractWhile the burden of caring for people living with dementia has been well documented, considerably less is known about how carers transition into post-care life. This study aimed to understand the experiences of primary family care-givers of people with dementia after the person with dementia has died. A specific focus of the research was understanding the barriers to transitioning into a positive post-care life, and facilitators that help sustain carers as they move forward after their care journey has ended. A qualitative exploratory, descriptive study was undertaken with nine primary carers for a family member who died with dementia (five spouses and four adult children). Semi-structured face-to-face or telephone interviews were conducted with carers between July and August 2016. Interview transcripts were analysed using a thematic approach. A number of factors that can act as barriers or facilitators to transition for carers were identified. Contextualising loss, restructuring identity, psychological health issues and the influence of social attitudes seemed to have a strong influence on carer outcomes. The findings highlight the need for further systematic social and informational support for carers to moderate post-care trajectories and improve carer transition.

Therapeutic Music Interventions to Support People With Dementia Living at Home With Their Family Caregivers

2019 ◽  
pp. 269-287
Author(s):  
Jeanette Tamplin ◽  
Imogen N. Clark
Keyword(s):  
Social Engagement ◽  
Self Awareness ◽  
Music Participation ◽  
Music Therapists ◽  
People With Dementia ◽  
Severe Stage ◽  
Musical Interactions ◽  
Diagnosis Of Dementia ◽  
Person With Dementia ◽  
At Home

Music can be used therapeutically in home and community settings throughout the trajectory of dementia. Communal singing experiences offer opportunities for music participation and social engagement that are accessible and enjoyable for people with dementia at any stage of severity. They also provide a means of communication and facilitate relationships between people with dementia and their carers through shared and meaningful musical interactions. In the early stages after a diagnosis of dementia, supported opportunities to sing together, along with the associated prospects for peer support and social interaction, may enable family carers to care for loved ones at home for as long as possible. In the later stages of dementia, singing may be the only way for the person with dementia to communicate and connect with others. Music processing capacities can be retained until the severe stage and music can stimulate memories and self-awareness for the person with dementia. Supported songwriting can be therapeutic for both people with dementia and their caregivers in facilitating emotional expression and acknowledging and validating feelings. This chapter explores the range of music participation opportunities available to people living with dementia at home with their caregivers at various stages of the disease. We also outline the differences in groups facilitated by music therapists and community musicians and highlight ways that caregivers can use music therapeutically in the home environment.

The key factors for the engagement of primary stakeholders in decision-making for the future care of people with dementia living in the community: a systematic integrative review

2019 ◽  
Vol 31 (12) ◽  
pp. 1731-1746 ◽  
Author(s):  
Michelle Lai ◽  
Yun-Hee Jeon ◽  
Heather McKenzie
Keyword(s):  
Decision Making ◽  
Healthcare Professionals ◽  
Integrative Review ◽  
Key Factors ◽  
People With Dementia ◽  
The Future ◽  
Future Care ◽  
Decision Making Processes ◽  
Primary Key ◽  
Person With Dementia

ABSTRACTBackground:Engagement of people with dementia who are living in the community, their family or carers, and healthcare professionals in decision-making related to their future care is an area yet to be explored in the literature. In particular, little is known about the factors most likely to underpin their engagement.Objectives:To identify key factors for the engagement of the person with dementia living in the community, as well as their family or carer and their healthcare professionals in decision-making processes related to future care.Design:This is an integrative review guided by the PRISMA guidelines; the Mixed Methods Appraisal Tool was used to assess study quality. MEDLINE, PubMed, CINAHL, PsycINFO and Embase databases were searched for articles published from 2012 to 2018 that focused on people with dementia who live in the community, their family or carers, and community-based healthcare professionals.Results:Twenty articles were included in the review, and six key factors were identified through thematic analysis: knowledge and understanding of dementia and decision-making for the future, valuing decision-making for the future, healthcare professionals’ communication skills, timing of initiating conversations, relationship quality, and orientation to the future.Conclusion:This review identifies the six key factors required for the engagement of the three primary key stakeholders in decision-making about the future care of people with dementia. It also situates the factors within the complex context in which people with dementia, their family or carers, and healthcare professionals typically find themselves.

Risk factors related to the admission of people with dementia into a long-term care institution in Spain: an explorative study

2016 ◽  
Vol 38 (1) ◽  
pp. 192-211
Author(s):  
ESTER RISCO ◽  
ESTHER CABRERA ◽  
M. CARME ALVIRA ◽  
MARTA FARRÉ ◽  
SUSANA MIGUEL ◽  
...  
Keyword(s):  
Risk Factors ◽  
Informal Care ◽  
Health Care Professionals ◽  
Long Term Care ◽  
Term Care ◽  
Care Institution ◽  
Care Givers ◽  
People With Dementia ◽  
Person With Dementia

ABSTRACTRisk factors associated with admission of people with dementia to long-term care institutions need to be identified to support health-care professionals in dementia care at home. An explorative study, combining quantitative and qualitative data collection methods, was performed in people with dementia in Spain. The sample, consisting of people with dementia receiving formal care from health-care professionals but at risk of institutionalisation, and their informal care-givers; and people with dementia recently admitted to a long-term care institution, and their informal care-givers, was interviewed between November 2010 and April 2012. Perceived reasons for admission were determined through an open-ended question put to both groups. Presumed risk factors were collected with validated questionnaires and analysed using bivariate analysis. A total of 287 people with dementia and informal care-givers were studied. Reasons given by the institutionalised group were mostly related to the level of dependency of the person with dementia. People recently admitted to a long-term care institution had more cognitive impairment, a greater degree of dependency and poorer quality of life than those still living at home. Home-care services in Spain need to develop or improve interventions based on the risk factors identified in this study: informal care-giver profile, high cognitive impairment, high level of dependency and the poor quality of life of the person with dementia.

scholarly journals Agency in dementia care: systematic review and meta-ethnography

2018 ◽  
Vol 31 (5) ◽  
pp. 627-642 ◽  
Author(s):  
Alessandro Bosco ◽  
Justine Schneider ◽  
Donna Maria Coleston-Shields ◽  
Kaanthan Jawahar ◽  
Paul Higgs ◽  
...  
Keyword(s):  
Decision Making ◽  
External Support ◽  
Family Carers ◽  
Third Order ◽  
Relational Processes ◽  
People With Dementia ◽  
Health And Social Care ◽  
Behavioral Mechanisms ◽  
Person With Dementia

ABSTRACTObjectives:Dementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision-making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia. This review explores the experience of agency in people living with dementia.Design:A systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioral mechanisms underlying the process of decision-making and looked at how the support of carers comes into play in making deliberate choices.Results:The meta-ethnography involved 20 studies. Three levels of third-order constructs were identified, each describing a decision-making pathway and reflecting the degree of autonomy of the person with dementia: autonomous decision-making, shared decision-making, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia.Conclusions:Our review will provide health and social care personnel with an understanding of the role of the carer in the decision-making process, and therefore which mechanisms need to be promoted or discouraged through training.

Do people with early stage dementia experience Prescribed Disengagement®? A systematic review of qualitative studies

2017 ◽  
Vol 30 (6) ◽  
pp. 807-831 ◽  
Author(s):  
Lee-Fay Low ◽  
Kate Swaffer ◽  
Margaret McGrath ◽  
Henry Brodaty
Keyword(s):  
Early Stage ◽  
Qualitative Studies ◽  
Subjective Experiences ◽  
Self Identity ◽  
Slowing Down ◽  
People With Dementia ◽  
Early Dementia ◽  
Diagnosis Of Dementia ◽  
Person With Dementia ◽  
Diagnostic Support

ABSTRACTBackground:Prescribed Disengagement® is the description of the post-diagnostic advice given to people after a diagnosis of dementia, which explicitly or implicitly suggests that the person should be slowing down or pulling back from activities. This results in isolation, loss of hope, self-esteem and self-identity, and threatens social health. This study aims to review whether Prescribed Disengagement® can be identified in the literature on subjective experiences of people living with early dementia.Methods:A systematic search was performed. Inclusion criteria were original empirical qualitative studies published in English that addressed the subjective experiences of living with a diagnosis of objectively defined early dementia. Thematic synthesis was undertaken.Results:Thirty-five papers involving 373 participants were included. Following a diagnosis, people with dementia struggled with self-identity, independence, control and status, activities, stigma, and how to view the future. Reactions in these areas ranged from active and positive to negative and passive. Many studies reported participants’ dissatisfaction with the way the diagnosis was communicated. There was insufficient information provided about dementia and limited treatments and support offered. The diagnosis process and post-diagnostic support may have contributed to disempowerment of the person with dementia, made it more difficult to accept the diagnosis, and exacerbated negative views and self-stigma around dementia.Conclusions:These results do not support the idea of Prescribed Disengagement®. However disengagement may have been implied during the diagnosis process and post-diagnostic support. Research is needed on how to improve the communication of dementia diagnosis and support people to live well post-diagnosis.

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