scholarly journals Relating to the end of life through advance care planning: Expectations and experiences of people with dementia and their family caregivers

Dementia ◽  
2022 ◽  
pp. 147130122110663
Author(s):  
Natashe Lemos Dekker ◽  
Sascha R Bolt
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Fine Tuning ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care ◽  
Life Care Planning

Background Dementia is widely considered a progressive condition associated with changes in cognitive capacities, which promotes the idea that people with dementia need to anticipate end-of-life care preferences. There is a growing body of interventions meant to support advance care planning (ACP) for people with dementia and their families. However, a deeper understanding of their experiences and expectations regarding planning the end of life is needed to inform ethically sound and person-centered ACP. This study explores how end-of-life care planning for people with dementia is experienced and perceived in practice. Methods We conducted a secondary analysis of qualitative data from in-depth interviews and ethnographic fieldwork. Participants included people with dementia living in the community or in nursing homes, family caregivers, and professional caregivers. During reflective sessions, the researchers moved back and forth between their original data and overarching topics related to ACP. Both performed deductive coding to filter relevant information from their data. Ongoing discussions allowed for the fine-tuning of themes. Results End-of-life care planning for people with dementia can encompass a paradox of control. While it may foster a sense of being in control, it may also feel like relinquishing control over future situations. It raises concerns regarding responsibility, as present, former and future wishes may not align. Family caregivers are often responsible for concrete end-of-life decision-making, prompting them to weigh previous wishes against present situations. Further, people with dementia may wish to focus on the present and distance themselves from the future. Discussion Advance decisions about end-of-life care are often decontextualized and people may find it difficult to oversee their future conditions and preferences. The widely recognized purpose of ACP to exert control over end-of-life care may need revision to match the needs of people with dementia while they are coping with their condition and an uncertain future.

scholarly journals Palliative Care With Dementia and Family Caregiver Involvement (A Collaborative Symposium between the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups)

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 786-786
Author(s):  
Jenny van der Steen ◽  
Christopher Johnson ◽  
Sheryl Zimmerman
Keyword(s):  
Palliative Care ◽  
Interest Groups ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Abstract This collaborative symposium offered by the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups addresses palliative care including advance care planning considerations for family caregivers and persons with dementia. Family caregivers may need information about palliative and end-of-life care that is specific to the person, the situation or the stage of dementia. This symposium shows information needs also differ by country and setting. Conversations about symptoms, and about current and end-of-life treatment preferences need support from healthcare professionals. The symposium shows results of a study on video recordings with end-of-life preferences and how, as a stand-alone, they may not inform palliative care practice, and integration of information sources for advance care planning is needed. We will also show that a question prompt list with examples of questions to encourage family caregivers to ask healthcare professionals can and should have different contents for different countries as the content reflects socio-cultural differences. In more studies, participants clearly neede information on the disease trajectory and available services. Such needs go beyond need for information on pain and other symptoms, as family caregivers often appreciate opportunities for social activities for persons with dementia. A decision aid study shows that persons with dementia and family caregivers can participate in advance care planning conversations when supported by the right tools. We argue that local client participation is important when developing tools. Overall, the symposium highlights the need for tailored tools to support face-to-face conversations with all stakeholders to encourage person-centred caregiving.

Advance care planning and people with dementia

2018 ◽  
Author(s):  
Karen Harrison Dening
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Diagnostic Process ◽  
Clear Understanding ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care ◽  
Person With Dementia

Advance care planning (ACP) is widely recognised as a process to enable an individual’s preferences and wishes for palliative and end-of-life care to be recognized at a time when they no longer have the capacity to make such ‘real time’ and autonomous decisions. In dementia, it is essential that ACP be offered early in the diagnostic process and supported when the person still has the ability to do so. Often decisions about end-of-life care for a person with dementia are made in the later stages of the illness, at a point of transition or crisis and with the absence of a clear understanding of their wishes. Clinicians may then turn to family members in the assumption that they know what these would be, however, this is often not the case which can add undue pressure to families in distressing circumstances.

scholarly journals End of Life Care: A Scoping Review of Experiences of Advance Care Planning for People with Dementia

Dementia ◽  
2016 ◽  
Vol 18 (3) ◽  
pp. 825-845 ◽  
Author(s):  
Kerry Jones ◽  
Giles Birchley ◽  
Richard Huxtable ◽  
Linda Clare ◽  
Tony Walter ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Scoping Review ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care

scholarly journals 142 Advance Care Planning in Patients with Dementia: An Audit on End of Life Care in Hospital Deaths

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii1-iii16
Author(s):  
Rachel Sullivan ◽  
Clodagh Power ◽  
Elaine Greene ◽  
Roisin Purcell
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Hospital Inpatient ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care ◽  
Resuscitation Status

Abstract Background End of life care (EOLC) planning is a difficult and often neglected area in dementia. Advanced care discussions play an important role in the planning of future care for patients with dementia. The NICE guidelines recommend that patients with dementia should be given every opportunity to discuss their wishes and preferences regarding their future care. The goal of our study was to explore the extent of EOLC planning in patients with dementia who died in hospital. Methods Patients with dementia who died in a large tertiary referral hospital in 2017 were identified via the Hospital Inpatient Enquiry (HIPE) database. A retrospective chart review was completed examining the documentation of Advance Care Planning (ACP) and discussions around end of life care. Charleston Comorbidity Index (CCI) was used to predict 1 year mortality. Results HIPE identified 49 patients with dementia who died in hospital. The average age was 84 and 53% were female. The commonest cause of death was respiratory (79.5%). Two thirds lived at home and 30% were nursing home residents. The mean CCI was 3.97 indicating 52% 1-year mortality, however only 34% were hospitalized in the last year. Only 14% had an ACP. Only 22% had resuscitation status recorded on admission. The majority had resuscitation status documented 15 days prior to death. In these cases 70% had clearly documented the discussion with family or patient and 84% documented ceilings of care 6 days prior to death. Palliative care were involved in 40% of cases. Two patients did not have resuscitation status documented prior to death and 3 received CPR. Conclusion Our study highlights the urgent need to facilitate conversations around end-of-life care with people with dementia. Advance care planning reduces the use of burdensome treatments, ensures dignity and comfort is prioritized enabling patients to live well until they die.

scholarly journals End of Life Care and Advance Care Planning for People with Dementia: A Pilot Simulation Course for Healthcare Professionals

2022 ◽  
Vol 62 ◽  
pp. 20-24
Author(s):  
Chun-Kit Chu ◽  
Aleks Saunders ◽  
Sandra Parish ◽  
Nykki Hetherton ◽  
Sean Cross ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care

scholarly journals Unraveling the Effects of Social Class and Systemic Racism on Advance Care Planning

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 472-472
Author(s):  
Jenny McDonnell
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Black Americans ◽  
Low Ses ◽  
Care Planning ◽  
Life Care ◽  
Black And White ◽  
Advance Care ◽  
Using Data

Abstract While advance care planning (ACP) is recognized as a key facilitator of high-quality, goal-concordant end-of-life care, black Americans are less likely to participate in ACP than non-Hispanic whites (Carr 2011; Detering et al. 2010). There are divided explanations for why these disparities persist. Some scholars attribute racial disparities in end-of-life care to socioeconomic (SES) differences between black and white Americans citing blacks’ and whites’ differentiated access to, control over, and use of material resources (Wilson 1978; Yearby 2011). Others assert that health care preferences do not solely reflect lack of resources or health literacy, but that the larger social context frames care preferences differently across racial and ethnic groups in American society (Alegria et al. 2011; Sewell and Pingel forthcoming). By turning the analytical lens to class-privileged black Americans, I investigate whether racism overflows the margins of class disadvantage. Using data from the Health and Retirement Study, I ran logistic regression and moderation models. I found that class-privileged blacks are less likely to engage in ACP than both high-SES and low-SES whites. The interaction of race and SES was negatively and significantly associated with ACP (OR=0.91; P<0.05), indicating that SES has a stronger effect on the probability of ACP among whites than among blacks. Predicted probabilities show that 51% of low-SES whites are likely to engage in ACP compared to 32% of high-SES blacks. These findings indicate that racialized disparities in ACP exist independent of SES, and that the effects of SES and race are intersectional rather than simply additive.

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