Attitudes toward advance care planning among persons with dementia and their caregivers

Pettigrew, Corinne; Brichko, Rostislav; Black, Betty S.; O’Connor, Maureen K.; Austrom, Mary Guerriero; Robinson, Maisha T.; Lindauer, Allison; Shah, Raj C.; Peavy, Guerry M.; Meyer, Kayla; Schmitt, Frederick A.; Lingler, Jennifer H.; Domoto‐Reilly, Kimiko; Farrar-Edwards, Dorothy; Albert, Marilyn

doi:10.1017/s1041610219000784

Cited by 31 publications

(47 citation statements)

References 45 publications

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“…Since this group may be most at risk for poor end-of-life care, future research should explore ACP engagement and recommendations for persons with dementia without familial support. Second, while some researchers have documented divergent engagement with and uptake of ACP based on race and ethnicity (McAfee et al, 2019;Pettigrew et al, 2019), our small sample size precluded us from exploring such differences.…”

Section: Study Limitationsmentioning

confidence: 95%

Engaging persons with dementia in advance care planning: Challenges and opportunities

2020

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This study reports findings from a series of focus groups with persons with dementia and family caregivers intended to explore: (1) perceptions of and experiences with advance care planning (ACP); (2) concerns related to future care including, but not limited to, end-of-life care; and (3) practices that may support positive engagement with ACP. A total of 18 participants including 10 persons with dementia and eight family caregivers participated in five focus groups held in two urban cities in Canada. All focus group deliberations were audio recorded, transcribed verbatim, and analyzed in five stages using a semantic thematic approach. All participants expressed some form of engagement in ACP, but understandings were limited and divergence was expressed regarding the timing of more expansive conversations about future care. Although some persons with dementia were ready to engage in future care discussions, most preferred focusing on the present and suggested their families did not require direction. This placed families in the complex dilemma of protecting their loved ones while compromising their own needs for dialogue. Although individually focused models of ACP engagement hold promise for those persons with dementia ready to engage in future planning, our findings suggest that early engagement of families in the reflective process may go a long way in supporting ACP activation. Our findings further suggest that persons with dementia who do not have close family/friends may require extensive ACP encouragement and support from service providers.

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Section: Study Limitationsmentioning

confidence: 95%

Engaging persons with dementia in advance care planning: Challenges and opportunities

2020

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“…These observations aside, it remains the case that Pettigrew et al have been able to observe relatively high levels of ACP engagement and an exploration as to what factors have influenced this participation is further required. Pettigrew et al (2019) also add to the existing evidence in relation to those African Americans affected by dementia and the propensity to prefer more aggressive forms of intervention at the end of life, a significant finding within the study. Again the work of Hong et al (2018) is of use here.…”

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confidence: 79%

“…The challenges in promoting engagement with such forms of end-of-life care planning are often contextual, and interventions to facilitate its usage are more often tailored to the specific needs of communities. The Pettigrew et al(2019) paper helps in further establishing the evidence that disparities in participation persist. But importantly, the paper also demonstrates that in some circumstances, sustained efforts to engage with the population of people affected by dementia can result in high levels of ACP utilization.…”

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confidence: 91%

Evidence of engagement with advance care planning for people affected by dementia in the United States

Ryan

2020

Int. Psychogeriatr.

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Advance care planning (ACP) in its current form has been a key feature of the end-of-life policy context since the mid-1970s. Take-up of ACP varies dramatically across countries and over time. In the US, ACP is relatively well utilized, with evidence that as many as one-third of the adult population have prepared an advance directive (Yadav et al., 2017). Elsewhere the prevalence in usage of ACP forms of planning is lower. Research in Australia, for example, suggests just below 30% of older Australians had completed an ACP (Detering et al., 2019). Furthermore, in Canada around 20% of adults are said to have an ACP in written form (Teixeira et al., 2015). The prevalence of ACP also varies across conditions. A US survey of cancer patients highlighted stable trends in the use of "living wills" (Narang et al., 2015), while patients with renal disease tend to demonstrate lower usage (Luckett et al., 2014). With the global rise in the number of people affected by dementia expected to rise over the next 20 years, the debate about the provision of optimal palliative care and improved end-of-life experiences is being viewed as a critical area of concern and is focusing the minds of policy makers across the globe. There is some considerable evidence to suggest that ACP is beneficial to people with dementia in these endeavors (Robinson et al., 2011). There is evidence to suggest that when people with dementia use ACP, it reduces the risk of suboptimal care at the end of life, promotes early consideration of decisions to mediate the impact of reduced communication, as well as moderating the potential detrimental effect of multiple care setting transition (Bryant et al., 2019). Despite this, studies in the use of ACP centered on people with dementia also demonstrate variation in utilization. Some time ago, Garand et al. (2011) prospectively measured the use of ACP among a group of people with cognitive impairment over a 5-year period, noting that by the end of the study 39% of participants had completed some form of end-of-life planning, with younger participants being more likely to have done so. However, other studies demonstrate much lower levels of participation, sometimes as low as 8% (Lewis et al., 2015). It is gratifying then that Pettigrew et al. (2019) in their study of

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“…Unfortunately, caregivers often serve as surrogate decision-makers without ever having discussed wishes and preferences for end of life medical care with the person with dementia [27,28] . People with dementia and caregivers may avoid such conversations because of discomfort with the subject, denial, or lack of understanding of the disease course [29][30][31][32] .…”

Section: Introductionmentioning

confidence: 99%

Goals of Care Conversations and Subsequent Advance Care Planning Outcomes for People with Dementia

Kiekhofer

Hooper

et al. 2021

JAD

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Background: Advance care planning has been shown to improve end of life decision-making for people with dementia. However, the impact of goals of care conversations between people with dementia and their caregivers has not been characterized. Objective: In this study, we evaluate the association between goals of care conversations and advance care planning outcomes. Methods: Retrospective advance care planning measures were collected via a questionnaire administered to 166 caregivers after the death of the person with dementia for whom they provided care. Results: At time of death, the majority of decedents with dementia had advance directives, health care agents, and previous goals of care conversations with their caregiver. Goals of care conversations were significantly associated with the perceived usefulness of advance directives, the perceived adherence to advance directives, and decedent dying at their desired place of death, but not with disagreements around end-of-life care. Conclusion: Our findings suggest that goals of care conversations are an important component of advance care planning. These findings support the development of interventions that facilitate such conversations between people with dementia and their caregivers.

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Attitudes toward advance care planning among persons with dementia and their caregivers

Cited by 31 publications

References 45 publications

Engaging persons with dementia in advance care planning: Challenges and opportunities

Engaging persons with dementia in advance care planning: Challenges and opportunities

Evidence of engagement with advance care planning for people affected by dementia in the United States

Goals of Care Conversations and Subsequent Advance Care Planning Outcomes for People with Dementia

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