Discordance between the perceptions of clinicians and families about end-of-life trajectories in hospitalized dementia patients

2021 ◽  
pp. 1-8
Author(s):  
Felicity Moon ◽  
David W. Kissane ◽  
Fiona McDermott
Keyword(s):  
End Of Life ◽  
General Medicine ◽  
Terminal Condition ◽  
Life Transitions ◽  
Social Constructionist ◽  
Structured Interviews ◽  
Loved One ◽  
Life Trajectories ◽  
People With Dementia ◽  
Illness Progression

Abstract Background Due to the unpredictable dementia trajectory, it is challenging to recognize illness progression and the appropriateness of a palliative approach. Further confusion occurs during hospitalization where the presence of comorbid conditions complicates prognostication. This research examined clinicians and families' perceptions of dementia as a terminal condition in relation to end-of-life admissions. Context The study was based in the General Medicine units of one Australian public hospital. Medical, nursing, and social work clinicians were recruited to reflect multidisciplinary perspectives. Bereaved caregivers of deceased patients with dementia were interviewed 3 months following death. Methods Qualitative research underpinned by a social constructionist epistemology and framed through complex systems theory. Semi-structured interviews generated data that illuminated perceptions of deterioration observed toward the end of life. Results Although participants anticipated general cognitive and physical deterioration associated with dementia, the emergence of comorbid illness made it difficult to predict the onset of the end of life. During a hospital admission, clinicians attributed the end of life to the advanced outcomes of dementia, whereas families described new medical crises. End-of-life admissions illuminated intersections between dementia and comorbidities rather than illness progression. In contrast with the perception that people with dementia lose awareness at the end of life, families drew attention to evidence that their loved one was present during the dying phase. Significance of results Our findings challenge the dominant understanding of dementia trajectories. Bifurcations between clinicians and families' views demonstrate the difficulties in recognizing end-of-life transitions. Implications for the integration of palliative care are considered.

Mentalizing Imagery Therapy mobile application for family dementia caregivers: feasibility and effects on mood and caregiving

2018 ◽  
Author(s):  
Abu Sikder ◽  
Francis Yang ◽  
Rhiana Schafer ◽  
Glenna A. Dowling ◽  
Lara Traeger ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Mobile Application ◽  
Self Regulation ◽  
Pilot Trial ◽  
Depression Symptom ◽  
Structured Interviews ◽  
Physical Strain ◽  
Dementia Caregivers ◽  
Loved One ◽  
People With Dementia

Objectives: Due to psychological and physical strain, family caregivers of patients with Alzheimer’s disease and related dementias are at high risk for depression and stress related disorders. We investigated the feasibility of a mobile application (App) intervention delivering Mentalizing Imagery Therapy (MIT), which incorporates guided imagery and mindfulness, to facilitate self-regulation and increase perspective on the mental life of self and others. Method: A 4-week pilot trial of an MIT App for family caregivers of people with dementia was conducted to assess feasibility of use, mood and depression symptom benefit, and relationship changes. Semi-structured interviews were conducted at the study’s conclusion to characterize participants’ perceived benefits. Results: 80% of 21 consented participants downloaded the App, utilized it at least once, and were further analyzed. Of these participants, average usage of audio recordings was 14 ± 10 (SD) days out of 28 possible, and 29 ± 28 individual sessions. Acute improvement in mood from before to after completion of exercises was uniformly observed (p < .001), and after four weeks there was a significant increase in positive affect and a reduction in negative affect. Participants with severe levels of depression (n=3) at baseline exhibited an improvement in symptoms at 4 weeks averaging 30% (p < .05). Semi-structured interviews revealed an increase in the ability to remain “centered" despite caregiving challenges, take the perspective of the loved one, and positively reframe the caregiver experience.Conclusion: App delivery of MIT is feasible for family dementia caregivers. Results showed moderate to high usage of the app for a majority of the users, and promising improvements in mood and depression. These data provide justification for larger, controlled trials.

Oscillations, boundaries and ethical care: Social work practitioner-researcher experiences with qualitative end-of-life care research

2021 ◽  
pp. 147332502110451
Author(s):  
Felicity Moon ◽  
Christine Mooney ◽  
Fiona McDermott ◽  
Peter Poon ◽  
David W Kissane
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Psychosocial Care ◽  
General Medicine ◽  
Visual Methods ◽  
Life Care ◽  
Structured Interviews ◽  
Research Issues ◽  
Health Network ◽  
Human Research Ethics

Policy and research acknowledge that the quality of end-of-life care in hospitals can be poor, with families reporting significant concerns regarding physical and psychosocial care. In order to design appropriate evidenced-based care approaches, we conducted qualitative research examining the perspectives of bereaved families of patients who received end-of-life care in our health network. This paper reports on ethical dilemmas facing practitioner-researchers conducting interviews with bereaved families. We recruited 40 bereaved family members to participate in semi-structured interviews discussing the care a loved one received while a patient under the general medicine units. Bereaved participants expressed grief, humour and anger regarding their experience, and several reported perceptions of negligent and harmful care. Irrespective of the protocols in place to mitigate distress, this posed an ethical dilemma for the practitioner-researcher as a member of the health network, who needed to balance clinical and research roles when responding to distress. The practitioner-researcher’s own bias and assumptions emerged when analysing families’ distressing recollections. More broadly, the issues discussed have clinical implications for models of hospital bereavement support. Participants’ use of photos and mementos jointly served to include the presence of the deceased in the research interview, but also highlighted the potential to utilise visual methods to examine sensitive research issues. It helps every practitioner-researcher to distinguish between research-oriented goals and clinical responsibilities to care provision as they consider their human research ethics application before beginning any research.

Conceptualization of a good end-of-life experience with dementia in Japan: a qualitative study

2019 ◽  
Vol 32 (2) ◽  
pp. 255-265
Author(s):  
Mayumi Nishimura ◽  
Ayako Kohno ◽  
Jenny T. van der Steen ◽  
Toru Naganuma ◽  
Takeo Nakayama
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
Life Experience ◽  
Central Position ◽  
Structured Interviews ◽  
Cultural Backgrounds ◽  
Term Care ◽  
Family Structures ◽  
People With Dementia

ABSTRACTObjectives:To conceptualize a “good end of life” for people with dementia from the perspectives of bereaved family caregivers in Japan.Design and participants:A qualitative study using in-depth, semi-structured interviews focused on the family caregivers’ perceptions of their loved one’s experiences. Family caregivers who had lost their relatives with dementia more than six months previously were recruited using maximum variation sampling by cultural subpopulation. A thematic analysis was conducted.Results:From 30 interviews held, four main themes emerged. A good end of life for people with dementia means experiencing a “Peaceful Death” while “Maintaining Personhood” at a “Preferred Place” allowing for feelings of “Life Satisfaction.” A “Preferred Place” emerged as a basic requirement to achieving a good end of life according to the three other themes, in particular, “Maintaining Personhood.” However, the interviewees experienced difficulties in ensuring that their loved ones stayed at a “Preferred Place.”Conclusions:Despite different cultural backgrounds, perceptions of a good end of life with dementia were remarkably similar between Japan and Western countries. However, recent societal changes in family structures and long-term care access in Japan may explain the theme of a comfortable place taking a central position. We suggest that these themes be considered and translated into care goals. They could supplement established end-of-life care goals for quality of life in dementia, which aim to maximize functioning and increase comfort.TRIAL REGISTRATION NUMBEREthics Committee of the Graduate School and Faculty of Medicine, Kyoto University (R0808-2)

scholarly journals The challenge pathway: A mixed methods evaluation of an innovative care model for the palliative and end-of-life care of people with dementia (Innovative practice)

Dementia ◽  
2017 ◽  
Vol 17 (2) ◽  
pp. 252-257 ◽  
Author(s):  
Emily Harrop ◽  
Annmarie Nelson ◽  
Helen Rees ◽  
Dylan Harris ◽  
Simon Noble
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Family Carers ◽  
Care Model ◽  
Structured Interviews ◽  
Project Staff ◽  
Mixed Methods Evaluation ◽  
People With Dementia ◽  
Audit Data

An innovative service for the palliative and end-of-life care of people with dementia was introduced at a UK hospice. This evaluation involved analysis of audit data, semi-structured interviews with project staff (n=3) and surveys of family carers (n=15) and professionals (n=20). The service has increased access to palliative, end-of-life care and other services. Improvements were reported in the knowledge, confidence and care skills of family carers and professionals. Carers felt better supported and it was perceived that the service enabled more patients to be cared for at home or in their usual place of care.

Cancer treatment decisions for people living with dementia: experiences of family carers

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld
Keyword(s):  
Cancer Treatment ◽  
Healthcare Professionals ◽  
Cancer Recurrence ◽  
Treatment Decisions ◽  
Support Needs ◽  
Family Carers ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
Cancer Data ◽  
People With Dementia

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

Complicated grief knowledge and practice: a qualitative study of general practitioners in Ireland

2021 ◽  
pp. 1-6
Author(s):  
Abiola Muhammed ◽  
Anne Dodd ◽  
Suzanne Guerin ◽  
Susan Delaney ◽  
Philip Dodd
Keyword(s):  
Qualitative Study ◽  
General Practitioners ◽  
Current Knowledge ◽  
Complicated Grief ◽  
Phenomenological Approach ◽  
Structured Interviews ◽  
Relevant Research ◽  
Loved One ◽  
Knowledge And Practice ◽  
Purposive Sample

Objective: Complicated grief is a debilitating condition that individuals may experience after losing a loved one. General practitioners (GPs) are well positioned to provide patients with support for grief-related issues. Traditionally, Irish GPs play an important role in providing patients with emotional support regarding bereavement. However, GPs have commonly reported not being aptly trained to respond to bereavement-related issues. This study explores GPs’ current knowledge of and practice regarding complicated grief. Methods: A qualitative study adopting a phenomenological approach to explore the experiences of GPs on this issue. Semi-structured interviews were carried out with a purposive sample of nine GPs (five men and four women) in Ireland. Potential participants were contacted via email and phone. Interviews were audio-recorded, transcribed and analysed using Braun & Clarke’s (2006) model of thematic analysis. Results: GPs had limited awareness of the concept of complicated grief and were unfamiliar with relevant research. They also reported that their training was either non-existent or outdated. GPs formed their own knowledge of grief-related issues based on their intuition and experiences. For these reasons, there was not one agreed method of how to respond to grief-related issues reported by patients, though participants recognised the need for intervention, onward referral and review. Conclusions: The research highlighted that GPs felt they required training in complicated grief so that they would be better able to identify and respond to complicated grief.

scholarly journals Discussions Between People With Dementia and Care Partners About End-of-Life Care Planning

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 162-162
Author(s):  
Megan Shepherd-Banigan ◽  
Cassie Ford ◽  
Emmanuelle Belanger ◽  
Courtney Van Houtven
Keyword(s):  
End Of Life ◽  
Linear Models ◽  
Positive Association ◽  
Living Will ◽  
Amyloid Pet ◽  
Care Planning ◽  
Care Plans ◽  
People With Dementia ◽  
Care Partners ◽  
Eol Care

Abstract Advanced care planning (ACP) leads to better end-of-life (EoL) care. Yet, some care-partners are unaware of the person with dementia’s (PwD) preferences. Care-partners play an important role in urging PwD to consider their EoL care wishes early in their disease course and to document those wishes. However, it is unknown whether discussions between care-partners and PwD are associated with documenting EoL care plans. We apply generalized linear models to baseline data from the CARE-IDEAS study which includes a sample of patients who received an amyloid PET scan and their care-partners (n=1,672). We examine the association between PwD report of having discussed EoL care with their care-partner and PwD report of having documented their plans through an advanced directive, a living will, or designating a health care proxy. PwD who reported speaking with their care-partners about EoL care were 10% (marginal probability (MP) 0.10; 95% CI: 0.8, 0.13) more likely to have documented their EoL care wishes. Furthermore, if PwD and care-partners agreed that they had discussed EoL care, PwD were 7% (MP 0.7; 95% CI 0.04, 0.10) more likely to report that they documented their EoL care plans. The positive association between communicating with care-partners about EoL care and having formal EoL care plans suggests that the ACP process could be a systematic approach to increase the care-partner’s knowledge of PwD EoL wishes. These results also suggest that increasing involvement of care partners in ACP may encourage patients to document their wishes at end of life.

scholarly journals Defining end of life in dementia: A systematic review

2021 ◽  
pp. 026921632110254
Author(s):  
Bria Browne ◽  
Nuriye Kupeli ◽  
Kirsten J Moore ◽  
Elizabeth L Sampson ◽  
Nathan Davies
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Functional Decline ◽  
Advanced Stage ◽  
Family Carers ◽  
Inclusion Criteria ◽  
Single Measure ◽  
People With Dementia ◽  
Limiting Condition

Background: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. Aim: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. Design: Systematic review and narrative synthesis. Data Sources: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. Results: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. Conclusion: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

scholarly journals “We Are Doing These Things So That People Will Not Laugh at Us”: Caregivers’ Attitudes About Dementia and Caregiving in Nigeria

2021 ◽  
pp. 104973232110041
Author(s):  
Candidus C. Nwakasi ◽  
Kate de Medeiros ◽  
Foluke S. Bosun-Arije
Keyword(s):  
The United States ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Term Care ◽  
Awareness Campaigns ◽  
Knowledge Deficit ◽  
People With Dementia ◽  
Qualitative Descriptive ◽  
The Impact

Some Nigerians, in their effort to make sense of dementia symptoms, use descriptions that may stigmatize people with dementia and their families. This qualitative descriptive study focused on the everyday understanding of dementia and the impact of stigma on the caregiving experiences of informal female Nigerian dementia caregivers. Semi-structured interviews were conducted with a purposive sample of 12 adult informal female caregivers in Nigeria and analyzed for themes. Afterward, results were presented to focus groups of 21 adult Nigerians residing in the United States for more contextual insight on the findings. The three major themes were misconceptions about dementia symptoms, caregiving protects against stigmatization, and stigma affects caregiving support. Overall, we argue that knowledge deficit, poor awareness, and traditional spiritual beliefs combine to drive dementia-related stigmatization in Nigeria. Strategies such as culturally appropriate dementia awareness campaigns and formal long-term care policies are urgently needed to help strengthen informal dementia caregiving in Nigeria.

scholarly journals “We’re on a Merry-Go-Round”: Reflections of Patients and Carers after Completing Treatment for Sarcoma

2021 ◽  
Vol 28 (4) ◽  
pp. 3003-3014
Author(s):  
Rhys Weaver ◽  
Moira O’Connor ◽  
Richard Carey Smith ◽  
Dianne Sheppard ◽  
Georgia K. B. Halkett
Keyword(s):  
Social Constructionist ◽  
Rare Cancer ◽  
Family Carers ◽  
Structured Interviews ◽  
Qualitative Research Design ◽  
Previously Treated ◽  
Sarcoma Treatment ◽  
Silver Lining

Sarcoma is a rare cancer that has a significant impact on patients’ and carers’ quality of life. Despite this, there has been a paucity of research exploring the diverse experiences of patients and carers following sarcoma treatment. The aim of this study was to explore patients’ and carers’ reflections on life after treatment for sarcoma. A qualitative research design with a social constructionist epistemology was used. Participants included patients previously treated for sarcoma (n = 21) and family carers of patients treated for sarcoma (n = 16). Participants completed semi-structured interviews which were analysed using thematic analysis. Three primary themes were identified: “This journey is never going to be over”, “But what happens when I am better?”, and finding a silver lining. Participants represented sarcoma as having a long-term, and sometimes indefinite, threat on their life that they had limited control over. Conclusions: This study highlight the heterogeneous and ongoing needs of sarcoma survivors and their families. Patients and carers strove to translate their experiences in a meaningful way, such as by improving outcomes for other people affected by sarcoma. Parental carers in particular attempted to protect the patient from the ongoing stress of managing the disease.

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