The impact of the mySupport advance care planning intervention on family caregivers’ perceptions of decision-making and care for nursing home residents with dementia: pretest–posttest study in six countries

Abstract

Background the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative’s future care. Objectives to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers’ uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents’ hospitalisations and documented advance decisions. Design a pretest–posttest design. Setting in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. Participants in total, 88 family caregivers completed baseline, intervention and follow-up assessments. Methods family caregivers’ scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents’ hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. Results family caregivers reported less decision-making uncertainty (−9.6, 95% confidence interval: −13.3, −6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. Conclusions the mySupport intervention may be impactful in countries beyond the original setting.

Dental decision-making for persons with dementia: A systematic narrative review

“…[2][3][4] Family members and caregivers of persons with dementia face many important decision-making situations that require expertise and ethical considerations in various areas. [5][6][7] Such situations usually occur suddenly, without any period of respite for consideration. [5][6][7] Therefore, it is important for professionals to provide family member and caregivers of persons with dementia with extensive information to help them make prompt and appropriate decisions on the patients' behalf.…”

“…[5][6][7] Such situations usually occur suddenly, without any period of respite for consideration. [5][6][7] Therefore, it is important for professionals to provide family member and caregivers of persons with dementia with extensive information to help them make prompt and appropriate decisions on the patients' behalf. [8] Dementia decreases a patient's receptivity to oral health management and dental treatment and decreases their decisionmaking capability.…”

Validating care and treatment scenarios for measuring decisional conflict regarding future care preferences among older adults

“…9 The DCS is increasingly utilised in studies of ACP and end-of-life decision-making. [13][14][15][16][17][18][19][20] Evidence of construct validity and association with accepted measures of decision-making processes have been provided for the DCS Part B scale items. 21,22 However, existing ACP research has utilised a range of hypothetical scenarios as Part A of the DCS scale, mostly without formal validation or user testing.…”

Consensus definition of advance care planning in dementia: A 33‐country Delphi study

“…Moreover, the communication process of ACP could help individuals anticipate an uncertain course of inevitable cognitive and physical decline and prepare family for a central role in decision-making when the patient can no longer be involved. 12,13 Therefore, ACP in dementia requires a flexible, pragmatic approach that is adapted to the individual and their social context. Such an approach may serve as a model to define ACP inclusive of persons with declining capacity more generally.…”

“…For example, reviews 9–11 conclude that ACP can result in receiving care concordant with preferences and fewer burdensome treatments. Moreover, the communication process of ACP could help individuals anticipate an uncertain course of inevitable cognitive and physical decline and prepare family for a central role in decision‐making when the patient can no longer be involved 12,13 …”