Factors Associated With Advance Care Planning and Informal Family Discussions About Future Care in a UK Cohort of People With Dementia and Their Carers From the Observational DETERMIND Study

Abstract

Advance care planning is a crucial element of high-quality, person-centred end-of-life care for people with dementia; however, levels have remained persistently low. Recent debates have emphasised informal conversations within families. Understanding factors associated with advance care planning and informal conversations may help target support more effectively. Data were collected in face-to-face interviews with 420 dyads of people with dementia and their carers, within 18 months of diagnosis, as part of the observational DETERMIND cohort study. Cross-sectional multivariable logistic regression analyses of observational data were used to examine factors associated with five types of future care planning. Nearly a quarter (22.1%) had undertaken no future care planning at all, not even informally with their carer. Less than half (44.9%) reported having an informal conversation with their carer, with only 16.9% saying that they had ‘definitely’ had such a conversation and the remaining 28% saying they had done so only ‘to some degree.’ Lasting powers of attorney (LPA) for health and welfare (64.7%) were common but frequently not underpinned by informal discussions. Conversations with a GP (14.1%), advance statements (9.1%) and advance decisions (10%) appeared to occur late, when people were older, had more severe dementia symptoms and lower quality of life, and carers were experiencing greater burden. People with dementia with better-resourced carers were more likely to engage in future care planning, suggesting inequalities in access. This included carer use of support and information services, associated with conversations with a GP or other professional and LPAs for health and welfare, and higher carer educational attainment, associated with having informal conversations. Lower dementia severity was also associated with informal conversations, suggesting a more active role for people with mild dementia. Our findings suggest a need for more relational approaches, including support for informal conversations, high-quality carer support, timely and consistent professional involvement and additional support for those without close carers.

Keywords

advance care planning future care planning dementia relational care carers

Background

Advance care planning is defined by the European Association for Palliative Care (EAPC) as a process that enables ‘individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences, if appropriate’ (Rietjens et al., 2017). It is recognised as a crucial element of high-quality, person-centred end-of-life care (National Institute for Health and Care Excellence, 2019), and has been associated in research with a range of positive outcomes, including greater alignment of care with individual preferences, lower levels of hospitalisation in the last three months of life, and improved bereavement outcomes for carers (Brinkman-Stoppelenburg et al., 2014; Dixon et al., 2018; McMahan et al., 2021; Wendrich-van Dael et al., 2020). Advance care planning is especially important for people with dementia since capacity to communicate and participate in decision-making declines as the cognitive impairment implicit in the condition progresses (National Institute for Health and Care Excellence, 2018; Van den Block, 2019; van der Steen et al., 2014a).

Despite reported benefits, levels of advance care planning among people with dementia have remained persistently low (Gotanda et al., 2022; Lewis et al., 2015). This is despite an emphasis in policy on early or ‘timely’ diagnosis to support better care planning (Hampel et al., 2022). Identified barriers for general populations include diagnostic uncertainty, discomfort discussing end of life, time pressures within services, and uncertainty about when and how advance care planning conversations should be initiated (Blackwood et al., 2019; Lund et al., 2015). People with dementia face additional challenges. They often have a limited understanding of their condition due to lack of insight (Sleeman & Sampson, 2022; van der Steen et al., 2013), avoidance (Ashworth, 2020). Professionals may avoid discussion of dementia as a progressive, terminal condition and/or lack the tools or confidence to facilitate advance care planning in this population (Moore et al., 2019; Tilburgs et al., 2018). Unwarranted assumptions about capacity can also lead to people with dementia being inappropriately excluded from discussions (Tilburgs et al., 2018). Carers can, as a result, be left making decisions on behalf of the person with dementia while feeling insufficiently prepared or supported (Sellars et al., 2019). Calls for a more relational approach have emphasised ongoing, informal conversations within families and preparing carers for later ‘in-the-moment’ decision-making (Malhotra, 2023; Van den Block, 2019; van der Steen et al., 2024).

Given this context, it is important to understand factors that are associated with formal advance care planning and informal family conversations, especially in the first year or two following diagnosis diagnosis when people with dementia are most able to contribute meaningfully. This may help policymakers and clinicians target their efforts more effectively. The existing literature here is limited. Most relevant studies focus on general populations of older people, not people with dementia, and are predominantly from the United States (US) (Lai et al., 2019). To our knowledge, there are no existing studies, particularly using large quantitative samples, that focus on individuals recently diagnosed with dementia including factors relating to the person with dementia and their carer. Studies into factors associated with informal conversations about future care are also rare (Van den Block, 2019). This study addresses these gaps by aiming to identify factors associated with different ways of planning for future care, including advance care planning and informal family conversations, in a large UK cohort of people recently diagnosed with dementia and their family carers.¹

Methods

Sample and Data Collection

This paper reports cross-sectional analyses of data from the DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND) study. DETERMIND is a mixed-methods, longitudinal, observational cohort study that recruited a new cohort of people with dementia (target n = 900) and their family carers from memory assessment services in three areas of England: South East, South London and North East. Recruitment took place between August 2019 and March 2023, with a pause in recruitment between March 2020 and February 2021 due to the COVID-19 pandemic.

Eligible participants were people with dementia within six months of diagnosis; there were no other exclusion criteria. Clinicians within participating services made initial approaches to eligible participants to find out whether they would be willing to be contacted by a DETERMIND researcher. Those who agreed were provided with study information and researchers followed up one to two weeks later to answer any questions and confirm willingness to take part. Where a family carer was available and willing to participate, they were also recruited.

Survey data were collected at baseline and annually for up to three years. Data analysed in this paper were drawn from baseline and the one-year follow-up interview to cover a follow up period of 18 months post-diagnosis. At each wave, people with dementia and carers completed a series of questionnaires administered by researchers face-to-face in participants’ homes (or by telephone or video-conferencing when pandemic restrictions prevented home visits). These lasted approximately 120 minutes. Interviews were conducted flexibly where needed, for example across multiple visits or with two researchers interviewing the person with dementia and carer simultaneously. All participants with dementia provided informed consent or were consented via a consultee, with proxy data collected where appropriate.

Further information about sampling, recruitment and data collection are provided in Farina et al. (2020). Ethics approval was granted by the Health Research Authority Brighton and Sussex Research Ethics Committee (REC 19/LO/0528; IRAS 261263).

Measures

Questions concerning five future care planning activities were included in the DETERMIND questionnaires (see Figure 1). These were chosen to reflect a broad conceptualisation of future care planning, encompassing both formal advance care planning processes (advance statements, advance decisions, and lasting power of attorney for health and welfare), as well as discussions about future care with a GP or other professional and informal conversations with a carer.

Figure 1.

Future care planning questions in DETERMIND questionnaires

The selection and structuring of these different future care planning outcomes were informed by existing conceptual and empirical literature that characterises advance care planning as a process rather than a single event, as involving both documentation and ongoing conversations over time, and as occurring across clinical and family contexts (Rietjens et al., 2017; van der Steen et al., 2024). Particular attention was given to relational perspectives emphasizing the role of family discussion and shared decision-making in dementia care (Phenwan et al., 2025; Van den Block, 2019).

As no suitable existing survey items were identified, these measures were developed specifically for DETERMIND. Their development was informed by the literature and consensus among the study’s co-authors, alongside consultation with an experts-by-experience group comprising five family carers and two people with dementia, supported by the study’s Research Involvement Manager, herself a carer of her husband with dementia.

People with dementia and carers were asked these questions at baseline baseline (within 6 months of diagnosis) and approximately one year later (within 18 months of diagnosis). Data from these two time points were included but analyses were cross-sectional rather than longitudinal. Outcomes were defined cumulatively, with data from both waves used to identify whether future care planning activities had occurred within the follow-up period, up to 18 months following diagnosis.

Five binary outcome measures were available for analysis. A positive response (e.g. having an advance statement) was recorded if the person with dementia or their carer reported such at either of the two time points.

DETERMIND included a wide range of potential factors to examine for their association with different approaches to planning for future care. Selection was informed by the literature (e.g. Lai et al., 2019; Lovell & Yates, 2014; van der Steen et al., 2014b), discussion amongst the DETERMIND study team comprised of clinical and non-clinical dementia researchers, and consensus among the study’s authors. As with the outcome measures, it was also informed by consultation with an experts-by-experience group. Factors were grouped into the following categories. Indicators for each factor were derived from baseline data unless otherwise indicated.

Demographic Factors

We included measures of sex and age for both the person with dementia and their carer, and whether or not at least one member of the dyad belonged to a non-White minority ethnic group (y/n). We also included the memory assessment service area (South East England; Newcastle and the North East; and South London).

Education Level/Socio-Economic Status

We included the highest educational qualification for the person with dementia and their carer, and socio-economic status using the Index of Multiple Deprivation (IMD) for England based on the person with dementia’s postcode (scores between 1 to 10).

Relationships

We included the relationship of the carer to the person with dementia (spouse, son/daughter, other). We measured the quality of the relationship between the person with dementia and their carer, viewed from both the person with dementia’s and carer’s perspective, using a question taken from the 5-item Positive Affect Index: “Taking everything into consideration, how close do you feel in your relationship with (person with dementia/carer)?” (Bengston & Schrader, 1982). Response options range from 1-not close at all, to 6-extremely close. We also included the six-item Lubben Social Network Scale (Lubben et al., 2006), with scores ranging from 0 to 30, where higher scores reflect more social engagement.

Health Status

We used the Standardised Mini Mental Scale Examination (sMMSE), administered in person by an interviewer (Molloy & Standish, 1997) to measure cognitive impairment with the total score ranging from 0 to 30 and distinguishing between mild (20–30), moderate (10–19) and severe (0–9) cognitive impairment. We used the Clinical Dementia Rating Scale (CDR) (Morris, 1993) to ascertain severity of dementia, this was completed by researchers after interviewing the person with dementia and discussion with their carer, with scores of 0 (no dementia), 0.5 (minimal), 1 (mild), 2 (moderate) and 3 (severe). We also included the Charlson Comorbidity Index (CCI), which predicts the ten-year mortality for those with a range of comorbid conditions (Charlson et al., 1987). This was completed by both the carer and the person with dementia.

Support and Information

We derived an index that combined responses to three questions about whether information was provided at diagnosis about, respectively, what dementia is, disease progression and advance care planning. A value of 1 indicated that information on at least one of these topics was provided. We also included a measure of whether the carer had used any of the following support and information services: self-help groups, education groups, expert relative groups, advice lines, online support, Alzheimer’s Café, and/or an Admiral Nurse. . This was asked at both baseline and again a year later in order to identify use across the follow up period, up to 18 months post-diagnosis.

Quality of Life and Burden

For the person with dementia this was measured using the self-report DEMQOL (Smith et al., 2007) and proxy-report DEMQOL-Proxy (Smith et al., 2007). For the carer we used C-DEMQOL (Brown et al., 2019). Carer burden was measured using the Zarit Carer Burden Inventory (short form) (ZCBI) (Zarit et al., 1980) with a score range of 0 to 88, with higher scores reflecting greater burden.

Optimism, Activation and Coping

We included the Revised Life Orientation Test (LOT-R) to measure optimism completed by the person with dementia and the carer (Scheier et al., 1994). Total scores for this five-item measure range from 0 to 20, with higher scores representing greater optimism. We also used the Brief COPE, both for the person with dementia and their carer (Carver, 1997). This was used to identify coping styles; problem-focused coping (scoring 0–32), emotion-focussed coping (scoring 0–48) and avoidant coping (scoring 0–32).

Statistical Analysis

All analysis was performed using Stata Version 18.5 (StataCorp, 2023). The demographic characteristics of the sample and descriptive statistics for the five outcomes of interest - conversations with a GP or other professional, advance statements, advance decisions, informal conversations with a carer and lasting power of attorney for health and welfare - were summarised. Subsequent statistical analysis was exploratory in nature. Selection of variables potentially associated with the different future care planning outcomes was iterative. Initial selection was theoretically driven, with bivariate analysis conducted as a screen to assess the association between each future care planning outcome variable and potentially related factors. If the factor indicator was continuous (e.g. age), t-tests were performed; if categorical (e.g., relationship of carer to person with dementia), chi-squared tests were performed. The high number of corrections might suggest using a Bonferroni correction (Dunn, 1961), however, given the exploratory nature of the analysis, we used a p-value of 0.05 to indicate statistical significance. We then estimated multivariable models for each of the future care planning outcomes using logistic regression. Each model started with factors found statistically significant in bivariate analysis. Where two or more of explanatory variables were found to be highly correlated, the one with the stronger bivariate association with the outcome was retained. A backward elimination process was followed to remove factors no longer statistically significant in the presence of the other factors. The final model for each outcome variable included only factors remaining statistically significant. Results are presented as odds ratios. Unless otherwise stated, the direction of the association remained the same across the bivariate and multivariable models in relation to the outcome variable.

The goodness of fit of each final model was assessed using the Pearson’s chi-square goodness of fit test (Pearson, 1992). This test evaluates the differences between the counts of observed and expected outcomes, using cells defined by the covariate patterns. The null hypothesis is that the differences between the observed and expected counts are similarly distributed. The overall rate at which the model correctly predicts the observed binary outcome is presented for each model (using the Stata ‘estat classification’ postestimation command with the observed probability of a positive outcome specified)) (StataCorp, 2023). We were guided by the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines for reporting of cross-sectional, observational studies (von Elm et al., 2007).

Results

Sample

We analysed data gathered from 420 dyads comprising people with dementia and carers who provided data at both baseline and at one-year follow-up, covering the period of up to 18 months post-diagnosis. These 420 dyads were drawn from a total cohort of 935 people with dementia and 698 carers; not all people with dementia had an involved carer, and not all dyads provided data at both time points. Baseline demographic characteristics of the 420 dyads are summarised in Table 1.

Table 1.

Demographic Characteristics of the Dyad Sample

	CarersN (%) unless otherwise indicated	People with dementiaN (%) unless otherwise indicated
	n = 420	n = 420
Gender
Male	133 (31.7)	219 (52.3)
Female	286 (68.3)	200 (47.7)
Age (years) Mean (SD)	69.2 (12.3)	80.1 (7.5)
Memory assessment service area
North East		132 (31.4)
South London		99 (23.6)
South East		189 (45.0)
Education – highest qualification
No qualification	53 (12.6)	105 (25.3)
O-level	152 (36.2)	162 (39.0)
AS-level, A-level, NVQ level 1-4	80 (19.1)	56 (13.5)
University degree	133 (31.7)	83 (20.0)
Other	2 (0.5)	9 (2.2)
Housing tenure
Owner		335 (81.1)
Renter/other		83 (19.9)
Ethnicity
White	403 (96.0)	405 (96.4)
Non-White	17 (4.1)	15 (3.6)
Marital status
Married/civil partner/cohabiting	367 (87.4)	288 (68.6)
Widowed	6 (1.4)	104 (24.8)
Single/divorced/separated/other	47 (11.2)	28 (6.7)
Lives with others
Yes		315 (79.2)
No		83 (20.9)
Relationship to person with dementia
Spouse/long-term partner	275 (65.6)
Son/Daughter	118 (28.2)
Other family member	23 (5.5)
Other	3 (0.7)

Attrition of dyads between baseline (n = 698) and 1-year follow-up (n = 420) was 39.8%. While relatively high, this is consistent with expectations for older populations with dementia, where attrition is typically non-random and linked to health status, age, caregiving context, and sample composition (Burke et al., 2019; Hernandez et al., 2024). The COVID-19 pandemic may also have influenced participation patterns.

Table 2 shows statistically significant differences in the demographic characteristics of dyads retained and not retained at one-year follow-up. These relate to age, housing tenure, ethnicity, marital status, and carer relationship to person with dementia. Statistically significant differences between people with dementia with and without a participating carer at baseline (n = 698 vs n = 237) were observed for age, ethnicity, education, marital status, and memory assessment service area (see Supplemental Table 1).

Table 2.

Demographic Characteristics of the Dyad Sample by Follow-Up Status: Retained at One-Year Follow-Up vs Not Retained

	Carers		People with dementia
	Retained at one-year follow-upN (%) unless otherwise indicated	Not retained at one year follow-upN (%) unless otherwise indicated	Retained at one-year follow-upN (%) unless otherwise indicated	Not retained at one year follow-upN (%) unless otherwise indicated
	n = 420	n = 278	n = 420	n = 278
Age (years) Mean (SD)	69.2 (12.3)*	67.0 (14.0)*	80.1 (7.5)*	82.1 (7.2)*
Housing tenure
Owner			335 (81.1)*	199 (71.6)*
Renter/other			83 (19.9)*	56 (20.1)*
Ethnicity
White	403 (96.0)*	256 (92.1)*	405 (96.4)*	258 (92.8)*
Non-White	17 (4.1)*	22 (7.9)*	15 (3.6)*	20 (7.2)*
Marital status
Married/civil partner/cohabiting	367 (87.4)*	225 (80.9)*	288 (68.6)*	156 (56.1)*
Widowed	6 (1.4)	9 (3.2)	104 (24.8)*	90 (32.4)*
Single/divorced/separated/other	47 (11.2)*	44 (15.8)*	28 (6.7)*	32 (11.5)*
Relationship to person with dementia
Spouse/long-term partner	275 (65.6)*	141 (50.7)*
Son/Daughter	118 (28.2)*	112 (40.3)*
Other family member	23 (5.5)	17 (6.1)
Other	3 (0.7)	8 (2.9)

*p < 0.05 for comparisons between groups; row-wise tests of proportions (χ²) for categorical variables and t-test for age.

Prevalence of Future Care Planning Activities

Table 3 shows the overall proportions reporting having undertaken each of the five future care planning activities. Lasting power of attorney for health and welfare was the most common activity, undertaken by nearly two-thirds of the sample (64.7%). Only around half of these (33.2%) had also had an informal conversation with their carer, with just a fifth (12.7%) saying that they had ‘definitely’ had such a conversation. Overall, less than half had discussed their future care with their carer (44.9%). Of these, 16.9% reported having ‘definitely’ done so and 28% only having done so ‘to some degree’. Other activities - conversations with a GP or other professional, advance statements, and advance decisions - ranged in prevalence from 9.1 to 14.1%. Nearly a quarter (22.1%) had undertaken no future care planning activity at all, not even an informal discussion with their carer. If we only include those reporting having ‘definitely’ had such a discussion (as opposed ‘to some degree’) this proportion rises to 29.3%. Around a third of the sample (33.6%) had engaged in just one activity, with around two-thirds of these (22.8)% having established a lasting power of attorney for health and welfare. Nearly half of the sample (44.3%) had undertaken two or more activities.

Table 3.

Distribution of Responses to Advance Care Planning Questions

	Completing future care planning activityN (%)
	N = 420
Conversation with a GP or other professional about future care (% yes)	59 (14.1)
Advance statement (% yes)	38 (9.1)
Advance decision (% yes)	41 (10.0)
Informal conversation with carer about future care (% yes)	186 (44.9)
Lasting power of attorney for health and welfare (% yes)	271 (64.7)
None of the above	93 (22.1)
One future care planning activity	141 (33.6)
Two or more future care planning activities	186 (44.3)

Conversation With a GP or Other Professional About Future Care

Just over 14% of people with dementia had participated in a conversation with a GP or other professional about their future care. Table 4 shows results for bivariate and multivariable analyses. In bivariate analyses, this was associated with the person with dementia being older, having more severe dementia (CDR), and having an avoidant coping style. It was also associated with higher carer burden (ZCBI), carer use of support and information services, the carer being a son/daughter rather than spouse and ethnicity.

Table 4.

Factors Associated With Having a Conversation With a GP or Other Professional About Future Care

	Bivariate associations p-value	Significant multivariable associations odds-ratios (95% CI)
	Bivariate associations p-value	N = 408
Age of person with dementia (year)	0.0001	1.09 (1.04, 1.14)
Clinical Dementia Rating (CDR) score^a	0.0002	2.32 (1.33, 4.05)
Person with dementia brief COPE – avoidant coping score^b	0.0378	ns
Zarit Carer Burden Inventory (ZCBI) score^c	0.0040	ns
Carer used support or information services
No	0.0495	2.17 (1.17, 4.03)
Yes	0.0495	2.17 (1.17, 4.03)
Relationship of carer to person with dementia
Spouse	0.0267	ns
Son/daughter
Other
Ethnicity within dyad
At least one of dyad non-White	0.0168	ns
Both White	0.0168	ns
Pearson’s chi-square goodness of fit statistic (p-value)		135.84 (0.4394)
Per cent correctly classified		67.9%

ns: not significant.

^aClinical Dementia Rating (CDR) score range: 0 (no dementia) to 3 (severe dementia).

^bPerson with dementia Brief COPE avoidant coping score range: 0–32; higher scores reflect greater use of this coping style.

^cZarit Carer Burden Inventory (ZCBI) score range: 0 to 88; higher scores reflect greater burden.

In multivariable analysis, factors remaining statistically significant were the person with dementia being older and having more severe dementia, and carers’ use of support and information services. A one-year increase in the person with dementia’s age was associated with a 9% increase in the odds of having such a conversation and a one-unit increase on the CDR more than doubled the odds of this outcome. Where the carer had used support and information services, the person with dementia had over double the odds of a conversation with a GP or other professional.

Advance Statement

Just over 9% of people with dementia had an advance statement. Table 5 shows results for bivariate and multivariable analyses. In bivariate analyses, this was associated with the person with dementia being older and having more severe dementia (CDR). It was also associated with lower carer quality of life (C-DEMQOL), greater carer burden (ZCBI) and memory assessment service area.

Table 5.

Factors Associated With Having an Advance Statement

	Bivariate associationsp-value	Significant multivariable associations -odds-ratios (95% CI)
	Bivariate associationsp-value	N = 410
Age of person with dementia (year)	0.0029	1.07 (1.02, 1.13)
Clinical Dementia Rating (CDR) score^a	0.0004	2.09 (1.07, 4.09)
C-DEMQOL score^b	0.0245	ns
Zarit Carer Burden Inventory (ZCBI) score^c	0.0007	1.04 (1.01, 1.08)
Memory assessment service area
South East	0.0138	—
South London		0.52 (0.21, 1.30)
North East		0.25 (0.09, 0.68)
Pearson’s chi-square goodness of fit statistic (p-value)		374.90 (0.4917)
Percent correctly classified		68.3%

ns: not significant.

^aClinical Dementia Rating (CDR) score range: 0 (no dementia) to 3 (severe dementia).

^bCarer Dementia Quality of Life (C-DEMQOL) score range: 30 to 150; higher scores reflect better quality of life.

^cZarit Carer Burden Inventory (ZCBI) score range: 0 to 88; higher scores reflect greater burden.

In multivariable analysis, factors remaining statistically significant were the person with dementia being older and having more severe dementia, increased carer burden and memory assessment service area. A one-year increase in the person with dementia’s age was associated with a 7% increase in the odds of having an advance statement, and a one-unit increase on the CDR more than doubled the odds. A one-unit increase in the ZCBI score was associated with a 4% increase in the odds of this outcome. Those in the South East of England had almost four times the odds of having an advance statement compared with the North East of England.

Advance Decision

Just 10% of people with dementia had an advance decision. Table 6 shows results for bivariate and multivariable analyses. This outcome was positively associated in bivariate analyses with lower person with dementia quality of life (DEMQOL), carer burden (ZCBI) and memory assessment service area.

Table 6.

Factors Associated With Having an Advance Decision

	Bivariate associationsp-value	Significant multivariable associations -odds-ratios (96% CI)
	Bivariate associationsp-value	N = 377
DEMQOL score^a	0.0105	0.97 (0.95, 1.00)
Zarit Carer Burden Inventory (ZCBI) score^b	0.0302	1.04 (1.00, 1.08)
Memory assessment service area
South East	0.0048	—
South London		0.82 (0.36, 1.84)
North East		0.15 (0.04, 0.53)
Pearson’s chi-square goodness of fit statistic (p-value)		323.07 (0.8369)
Percent correctly classified		10.6%

^aDementia Quality of Life (DEMQOL) score range: 28 to 112; higher scores reflect better quality of life.

^bZarit Carer Burden Inventory (ZCBI) score range: 0 to 88; higher scores reflect greater burden.

In multivariable analysis, all factors remained statistically significant. A one-unit decrease in the person with dementia’s quality of life score (DEMQOL) was associated with a 3% increase in the odds of having an advance decision. A one-unit increase in the ZCBI score was associated with a 4% increase in the odds of this outcome. Those in the South East of England had almost seven times the odds of having an advance decision compared to those in the North East.

Informal Conversation With Carer About Future Care

Just under 45% of people with dementia had had an informal discussion with their carer about future care. Table 7 shows results for bivariate and multivariable analyses. In bivariate analysis, this was associated with the person with dementia being older and having more severe dementia (CDR), and with carers’ having higher educational qualifications.

Table 7.

Factors Associated With Having an Informal Conversation With a Carer About Their Future Care

	Bivariate associationsp-value	Significant multivariable associations -odds-ratios (95% CI)
	Bivariate associationsp-value	N = 403
Age of person with dementia (year)	0.0096	1.04 (1.01, 1.07)
CDR score^a	0.0192	0.50 (0.30, 0.85)
Carer education
No qualifications	0.0062	—
O-level		2.92 (1.40, 6.07)
AS-level, A-level, NVQ level 1–4		2.64 (1.19, 5.83)
University degree		3.46 (1.64, 7.28)
Other		—
Pearson’s chi-square goodness of fit statistic (p-value)		197.23 (0.3826)
Percent correctly classified		48.6%

^aClinical Dementia Rating (CDR) score range: 0 (no dementia) to 3 (severe dementia).

In multivariable analysis, all factors remained statistically significant. A one-year increase in the person with dementia’s age was associated with a 4% increase in the odds of having an informal conversation, while a one-unit increase in the CDR score halved the odds. Compared to people with dementia whose carers had no qualifications, those whose carers had O-levels or equivalent had three times the odds of having an informal conversation, while those whose carers had a university degree had almost three and a half times the odds of this outcome.

Lasting Power of Attorney for Health and Welfare

Around two-thirds of people with dementia (64.7%) had a lasting power of attorney for health and welfare. Table 8 shows results for bivariate and multivariable analyses. In bivariate analyses, this was associated with people with dementia being older, living in less deprived areas (IMD) and being more optimistic (LOT-R). It was also associated with the carers’ relationship to the person with dementia (spouse, son/daughter, other), carers having good social networks (Lubben Social Network Scale), carer use of support and information services, carers’ having higher educational qualifications and carers having an avoidant coping style (Brief COPE).

Table 8.

Factors Associated With Having a Lasting Power of Attorney for Health and Welfare

	Bivariate associationsp-value	Significant multivariable associations -odds-ratios (95% CI)
	Bivariate associationsp-value	N = 357
Age of person with dementia (year)	0.0007	1.05 (1.02, 1.08)
Socio-economic status of person with dementia (IMD)^a	0.0004	1.12 (1.04, 1.22)
Relationship of carer to person with dementia
Spouse	0.0246	ns
Son/daughter
Other
Person with dementia revised life orientation test score^b	0.0403	ns
Carer Lubben social network scale score^c	0.0088	ns
Carer used support and information services
No	0.0298	1.85 (1.07, 3.21)
Yes	0.0298	1.85 (1.07, 3.21)
Carer education
No qualifications	0.0048	ns
O-level or equivalent
A-level or equivalent
University degree
Other
Carer brief COPE – Avoidant focused coping score^d	0.0283	1.10 (1.02, 1.19)
Pearson’s chi-square goodness of fit statistic (p-value)		339.66 (0.4951)
Percent correctly classified		60.5%

ns: not significant.

^aIndex of Multiple Deprivation (IMD) score decile; greater scores reflect lower area deprivation.

^bRevised Life Orientation Test (LOT-R) score range: 0 to 20; higher scores reflect greater optimism.

^cCarer Lubben Social Network Scale range: 0 to 30; higher scores reflect more social engagement.

^dBrief-COPE avoidant focused coping score range: 0–32; higher scores reflect greater use of this coping style.

In multivariable analysis, factors remaining statistically significant were the person with dementia being older and living in a less deprived area, carer use of support and information services, and carers having an avoidant coping style. A one-year increase in the person with dementia’s age was associated with a 5% increase in the odds of having a lasting power of attorney for health and welfare, and each one-decile increase in IMD was associated with a 12% increase in the odds for this outcome. Carer use of support and information services was associated with an 85% increase in the odds of having a lasting power of attorney for health and welfare. A one-unit increase on the carer Brief-COPE avoidant coping score was associated with 10% greater odds of this outcome.

Discussion

Analysing data from 420 dyads of people with dementia and carers drawn from DETERMIND, we examined factors associated with planning for future care in the first 18 months following diagnosis. We adopted a relational perspective, using factors related to people with dementia and carers to consider their respective contributions. Five types of future care planning were examined: conversations with a GP or other professional, advance statements, advance decisions, informal conversations with family carers, and lasting power of attorney for health and welfare. Our findings indicate that within the critical first 18 months following diagnosis just under a quarter of people with dementia undertake no planning for their future care at all, not even through informal conversations with their carers. Lasting power of attorney for health and welfare was common but often not underpinned by conversations with carers, with other types of future care planning tending to occur late, at points of deterioration and carer strain. Carer resources were associated with having a conversation with a GP or other professional, informal conversation and lasting power of attorney for health and welfare.

Prevalence of Future Care Planning Activities

Lasting power of attorney for health and welfare was the most common activity. Although nearly two-thirds of the sample had one (64.7%), this still left around one in three without a legally appointed decision-maker. Notably too, even though two-thirds of the sample had a lasting power of attorney for health and welfare, only just over half of these (33.2%) had also had had an informal conversation with their carer. This may leave carers who are appointed as attorneys feeling unprepared for decision-making and vulnerable to the risk of decisional conflict and distress (Sellars et al., 2019).

Informal family conversations were reported by just under half (44.9%) of participants, although only 16.9% reported ‘definitely’ having such a conversation with the remainder (28%) reporting doing so only ‘to some degree’. While qualitative evidence suggests that much future care planning occurs informally in everyday conversations (e.g. de Vries & Drury-Ruddlesden, 2019; Dickinson et al., 2013; Ryan et al., 2017) our findings indicate that such discussions are not universal among people with dementia and their carers and may be limited in depth. Other forms of future care planning were less common; conversations with a GP or other professional occurred in just over 14% of cases, while advance statements and advance decisions were each reported by around 10%.

Overall, just under a quarter (22.1%) had undertaken no future care planning at all, not even by having an informal conversation with a carer. Including only informal conversations where participants had responded ‘definitely’ rather than just ‘to some degree’ increases this proportion to 29.3%. These various limitations in future care planning engagement increase the risk of crisis-driven decision-making and also sit uneasily alongside policy ambitions for early diagnosis to support timely, informed planning for people with dementia and their families (Hampel et al., 2022).

Carer-Related Factors That Support Planning

In several models, carer-related factors were associated with the outcome. One of these was educational attainment. Existing research finds an association between people with dementia’s higher educational attainment and advance care planning (Breslin et al., 2022; Gallagher et al., 2020; Hirschman et al., 2012), including in a meta-analysis across eight dementia-specific samples (Zhai et al., 2024). Our findings show a similar association with having an informal conversation, but in relation to the carer’s educational attainment rather than the person with dementia’s. This finding highlights the risk of health and care inequalities and emphasises the need to provide better support to help families initiate and sustain these conversations (Sussman et al., 2021; Van den Block, 2019).

Another factor was carers’ use of support and information services such as education groups, expert relative groups, advice lines, online support, Alzheimer’s Café, and/or an Admiral Nurse. This was strongly associated with having a lasting power of attorney for health and welfare and with having a conversation with a GP or other professional. Use of these services may have helped to inform, prompt and support carers so they could better assist their relative. For example, some dementia support services introduce advance care planning and then advise following up with a GP. However, it may also reflect carers' greater engagement, health literacy, and forward planning orientation more generally. In any case, these results suggest that engaged and well-supported carers are important in helping people with dementia undertake future care planning activities.

Coping Style

We found that having a lasting power of attorney for health and welfare was positively associated with carers having an avoidant coping style. This was unexpected. Although there is evidence that some people with dementia (Ashworth, 2020; Lai et al., 2019; Lemos Dekker & Bolt, 2022) and some carers (Sellars et al., 2019) prefer to avoid thinking about the future, avoidant coping is generally associated with less rather than more future care planning. One possible interpretation is that having a lasting power of attorney for health and welfare is more normative than other types of planning, such that it it captures a wide range of coping styles, including avoidant ones, rather than being driven by especially engaged planners. Establishing a lasting power of attorney for health and welfare is also bounded and procedurally discrete and, compared to other types of future care planning, can be low in requirements for reflecting on or discussing possible future health states. This is supported by the fact that only around half of those with a lasting power of attorney for health and welfare (51.3%) also reported an informal conversation with their carer, with only a fifth (19.7%) saying that they had ‘definitely’ had such a conversation.

Age, Severity of Dementia, Poor Quality of Life and Carer Burden

Having a conversation with a GP or other professional and having an advance statement were each associated with the person with dementia being older and having more severe dementia, suggesting that these activities tended to occur later in the illness trajectory. However, having a conversation with a GP or other professional was also associated with carers’ use of support and information services, suggesting that this particular activity was not driven by deterioration alone. Advance statements and advance decisions, however, both appeared to occur at points of strain or crisis; they were both associated with higher levels of carer burden, and advance decisions were also associated with the person with dementia having lower quality of life. In the existing literature, the relationship between carer burden and advance care planning remains unclear, with limited studies producing mixed findings (Kermel Schiffman & Werner, 2021; Kim et al., 2020). Evidence about quality of life and advance care planning is also not well-established, with only some limited evidence of an association with potentially related factors such as depression and anxiety (Dao-Tran et al., 2026; McMahan et al., 2020; Nakanishi et al., 2022). Taken together, these findings point to a pattern of late engagement, which may reflect both delays in initiation by professionals (Azizi et al., 2022; Dixon & Knapp, 2018; Tetrault et al., 2022; Visser et al., 2022) and/or preferences among some people with dementia and carers to defer planning (Ashworth, 2020; Lai et al., 2019).

On the other hand, we found that participation in an informal conversation about future care was strongly associated with having less severe dementia, as well as carers’ higher educational attainment, suggesting a more active role for people with dementia. This highlights the capacity of people with dementia to engage in early discussions when given appropriate relational support (Dixon et al., 2022).

The Role of Services in Implementing Advance Statements and Advance Decisions

Advance statements and advance decisions were strongly associated with memory assessment service area, with those in the South East having around four times the odds of an advance statement and nearly seven times the odds of an advance decision compared with the North East. This suggests a service effect, reflecting variation in professional involvement or practice between areas.

Socio-Economic Status

Those with a lasting power of attorney for health and welfare tended to be older and live in less deprived areas. It seems possible that those in less deprived areas may find the process of establishing a lasting power of attorney for health and welfare easier to navigate and be better able to meet the costs involved, which include a registration fee and, potentially, solicitors’ costs. Similar associations between socio-economic status and advance care planning are found in existing studies (Barwise et al., 2019; Davies et al., 2019; Nouri et al., 2020), although some targeted studies have found no association (Khosla et al., 2016). Area deprivation, however, is only one measure of socio-economic status, and findings may vary depending on how socio-economic status is operationalised. For dementia-specific samples, there is only evidence of an association with the potentially related factor of income, based on two studies in a recent meta-analysis (Zhai et al., 2024).

Factors That Were Not Statistically Significant

It is worth noting that many factors were not statistically significant in any of our multivariable models. Demographic factors included sex, despite existing research finding women more likely to engage with advance care planning (Baughman et al., 2024; Gallagher et al., 2022; Kalousová & Carr, 2024), including in dementia-specific samples (Zhai et al., 2024). Ethnicity was also non-significant, except in bivariate analysis with having a conversation with a GP or other professional. While some literature points to disparities (Hirschman et al., 2012; Inoue, 2016; Lovell & Yates, 2014; McDermott & Selman, 2018; Pettigrew et al., 2020; Sanders et al., 2016), including in dementia (van der Steen et al., 2014b), much of this evidence comes from the US (Crooks et al., 2023; Dixon et al., 2015; Zhai et al., 2024), with others arguing that differences by ethnicity commonly disappear when factors such as socioeconomic status and education are accounted for (Han & Nam, 2020).

We tested for a number of relationship-related factors that proved non-significant in multivariable models. These included the relationship of the carer to the person with dementia (spouse, son/daughter, other) despite existing evidence that offspring may be more comfortable discussing the future than spouses (Cheung et al., 2018). These also included the perceived quality of the relationship between the person with dementia and the carer (Positive Affect Index), despite some existing evidence that relationship quality may support advance care planning (Bloom & Fisher, 2021; Carr et al., 2013). The Lubben Social Network scale was also non-significant, except in bivariate analysis with having a lasting power of attorney for health and welfare, despite some existing evidence that carers with greater social capital and networks are better positioned to plan for future care (Miyashita et al., 2019).

Optimism (LOT-R) was also non-significant in multivariable models, as was having more comorbid health conditions (CCI), supporting existing evidence of no relationship (Krishnappa et al., 2023). Finally, provision of information at diagnosis about dementia or advance care planning was non-significant in multivariable models, despite existing evidence that poor understanding is a barrier to engagement (Lai et al., 2019). This may, however, not be because information is not important, but may be because people feel overwhelmed at this time and cannot absorb all the information they receive (Dixon et al., 2025; Song et al., 2024) or because they find the information they receive difficult to understand or act on (Dixon et al., 2025; Mansfield et al., 2022).

Summary and Implications for Policy

People with dementia should have the opportunity to help plan their future care, starting early in the disease trajectory and contributing for as long as possible (Van den Block, 2019; van der Steen et al., 2014a, 2024). Our findings indicate that within the important first 18 months following diagnosis many people with dementia are not undertaking any planning for their future care at all, not even through informal conversations with their carers. Lasting power of attorney for health and welfare was the most common planning activity but these often appeared not to be underpinned by conversations with carers about preferences for care, leaving carers vulnerable to the risk of later decisional uncertainty, burden and distress (Sellars et al., 2019). Our findings echo those found in other studies showing professional support for future care planning tending to occur late, at points of health deterioration and carer strain (Azizi et al., 2022; Dixon & Knapp, 2018; Tetrault et al., 2022; Visser et al., 2022). Our findings also add to growing evidence that carer characteristics significantly influence whether and how people with dementia plan for future care (van der Steen et al., 2014b). This suggests a potential for inequalities in access and emphasises the need to develop more relational approaches (Colclough et al., 2023; Malhotra, 2023; Phenwan et al., 2025; Sussman et al., 2021).

Supporting people to initiate and sustain informal conversations about future care may be especially valuable (Van den Block, 2019). This may help to improve the quality of formal processes, ensuring they are more relationally grounded and lay ground for evolving discussions, both within families and potentially with professionals, allowing people with dementia to continue to express their wishes even as their capacity diminishes (Phenwan et al., 2025; Ryan, 2020; van der Steen et al., 2024). Such conversations may also better position carers for in-the-moment decision-making when the need arises (Malhotra, 2023; Phenwan et al., 2025). Our findings draw attention to the need for good quality support for carers (Malhotra, 2023; Van den Block, 2019; van der Steen et al., 2024) and targeted support for those without carers (Cudjoe et al., 2020).

Strengths and Limitations

Much existing evidence focuses on formal advance care planning, with US-based studies dominant. Our study contributes new evidence from a large cohort of dyads of people with dementia and carers in England and additionally includes factors associated with informal conversations with carers about future care. The inclusion of person with dementia and carer factors in the same models allows for an examination of their relative contributions. Limitations include analyses being restricted to dyads providing data at two time points. Comparison of the analytic sample of dyads with those dyads not retained suggested some differences in age, housing tenure, ethnicity, marital status, and carer relationship to person with dementia, indicating that findings may not be fully generalisable to all people recently diagnosed with dementia and their carers. Equally we did not include people with dementia without a participating carer, who may differ in their future planning. We were also limited by variables available in the DETERMIND dataset. Although our analysis uses data from two time points, all analyses are cross-sectional and causal inferences cannot be made. We have not tested lagged effects or attempted to model causal relationships. Further analysis is required to better understand the causal pathways between the various factors and approaches to future care planning; these are planned with data covering further waves of assessment.

Conclusion

The exploratory analyses presented in this paper extend existing evidence by conceptualising future care planning as a relational process, modelling characteristics of people with dementia and carers together to assess their relative contributions. It also extends existing evidence by examining informal conversations with carers alongside conversations with professionals and documented advance care planning.

We found lasting power of attorney for health and welfare to be common but frequently not underpinned with meaningful discussion with carers, while informal conversations with carers remained limited and professional involvement reactive, occurring late in the trajectory. Pro-active planning is strongly shaped by carer resources, raising concerns about inequalities of access. Our findings suggest a need for more relational approaches to future care planning, including support for informal conversations, high-quality carer support, timely and consistent professional involvement and additional support for those without close carers.

Supplemental Material

Supplemental Material - Factors Associated With Advance Care Planning and Informal Family Discussions About Future Care in a UK Cohort of People With Dementia and Their Carers From the Observational DETERMIND Study

Supplemental Material for Factors Associated With Advance Care Planning and Informal Family Discussions About Future Care in a UK Cohort of People With Dementia and Their Carers From the Observational DETERMIND Study by Josie Dixon, King Derek, Ben Hicks, Sube Banerjee in Dementia

Footnotes

Acknowledgments

We are deeply grateful to everyone involved in the DETERMIND study, which made this linked study possible and all people with dementia and carers who took part. We are also grateful to the Alzheimer’s Society for their ongoing support.

ORCID iDs

Josie Dixon

Derek King

Ben Hicks

Sube Banerjee

Ethical Considerations

This research was conducted in accordance with relevant guidelines and regulations with ethical approval provided by the Health Research Authority (HRA) Social Care Research Ethics Committee (SCREC), Reference: 19/IEC08/0048.

Consent to Participate

Informed consent was obtained from all participants.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The DETERMIND Programme was funded by the Economic and Social Research Council (ESRC), grant reference ES/S010351/1. This linked study was funded by the Alzheimer’s Society, Grant reference: 401 (AS-PG-17b-015).

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

DETERMIND data will be made publicly available by 2028. In the meantime, data can be made available on request by contacting Sube Banerjee. Faculty of Medicine and Health Sciences, The University of Nottingham, Nottingham, UK.*

Supplemental Material

Supplemental material for this article is available online.

Note

Author Biographies

Dr. Josie Dixon is an Assistant Professorial Research Fellow in the Care Policy and Evaluation Centre (CPEC), Department of Health Policy, London School of Economics and Political Science and Associate Deputy Director (Social Care), Policy Innovation and Evaluation Research Unit (PIRU). Her research focusses on ageing and care, particularly end-of-life care, dementia care, and social care for older people. In previous roles, Josie has directed Government and other nationally commissioned qualitative and mixed-method research projects and worked with local leaders to improve strategic planning and service provision.

Dr. Derek King is an Assistant Professorial Research Fellow in the Care Policy and Evaluation Centre (CPEC), Department of Health Policy, London School of Economics and Political Science. He has conducted extensive research in financing of long-term care, services and outcomes for unpaid carers and the economics of mental health care provision. His current work focuses on quality of life outcomes of carers of people with dementia; carers’ use of technology to support them in their caring role, and long-term health outcomes for adolescents with mental health problems.

Dr. Ben Hicks is a Principal Research Fellow at the University of Nottingham and the DETERMIND Programme Co-ordinator. His research concerns supporting quality of life and social inclusion for people living with dementia through exploring the differing lived experiences of the condition and addressing the inequalities that may arise in the dementia care pathway. His PhD focussed on examining and supporting social inclusion in rural-dwelling older men with dementia through a community technological initiative tailored towards their multiple masculinities.

Professor Sube Banerjee is Pro Vice-Chancellor for the Faculty of Medicine and Health Sciences University of Nottingham and works as an old age psychiatrist. He is active in health system development for older adults and those with dementia and served as the UK Department of Health’s senior professional advisor on dementia leading the development of its National Dementia Strategy. An active researcher, he has been awarded national and international awards for work in policy and research in dementia and is the DETERMIND Principal Investigator.

References

Ashworth

R. M.

(2020). Looking ahead to a future with Alzheimer’s disease: Coping with the unknown. Ageing and Society, 40(8), 1647–1668. https://doi.org/10.1017/S0144686X19000151

Azizi

Tilburgs

van Hout

H. P. J.

van der Heide

Verheij

R. A.

Achterberg

W. P.

van der Steen

J. T.

Joling

K. J.

(2022). Occurrence and timing of advance care planning in persons with dementia in general practice: Analysis of linked electronic health records and administrative data. Frontiers in Public Health, 10, 653174. https://doi.org/10.3389/fpubh.2022.653174

Barwise

Juhn

Y. J.

C. I.

Novotny

Jaramillo

Gajic

Wilson

M. E.

(2019). An individual housing-based socioeconomic status measure predicts advance care planning and nursing home utilization. American Journal of Hospice & Palliative Care, 36(5), 362–369. https://doi.org/10.1177/1049909118812431

Baughman

K. R.

Ludwick

Audi

Harlan

(2024). Gender and couple status differences in advance care planning: A cross-sectional study. Palliative Care and Social Practice, 18, 26323524241287221. https://doi.org/10.1177/26323524241287221

Bengston

V. L.

Schrader

S. S.

(1982). Parent-child relations. In Mangen

Peterson

W. A.

(Eds.), Research instruments in social gerontology (2, pp. 115–185). University of Minnesota Press.

Blackwood

D. H.

Walker

Mythen

M. G.

Taylor

R. M.

Vindrola-Padros

(2019). Barriers to advance care planning with patients as perceived by nurses and other healthcare professionals: A systematic review. Journal of Clinical Nursing, 28(23-24), 4276–4297. https://doi.org/10.1111/jocn.15049

Bloom

Fisher

(2021). Relationship quality predicts advance care planning engagement in families experiencing cognitive decline. Innovation in Aging, 5(Supplement_1), 950. https://doi.org/10.1093/geroni/igab046.3430

Breslin

Connolly

Purcell

Lavan

Kenny

R. A.

Briggs

(2022). What factors are associated with advance care planning in community-dwelling older people? Data from TILDA. European Geriatric Medicine, 13(1), 285–289. https://doi.org/10.1007/s41999-021-00593-2

Brinkman-Stoppelenburg

Rietjens

J. A.

van der Heide

(2014). The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine, 28(8), 1000–1025. https://doi.org/10.1177/0269216314526272

10.

Brown

Page

T. E.

Daley

Farina

Basset

Livingston

Budgett

Gallaher

Feeney

Murray

Bowling

Knapp

Banerjee

(2019). Measuring the quality of life of family carers of people with dementia: Development and validation of C-DEMQOL. Quality of Life Research, 28(8), 2299–2310. https://doi.org/10.1007/s11136-019-02186-w

11.

Burke

S. L.

Naseh

Fava

N. M.

O’Driscoll

Alvarez

Cottler

L. B.

Duara

(2019). Factors influencing attrition in 35 Alzheimer’s Disease centers across the USA: A longitudinal examination of the National Alzheimer’s coordinating center’s uniform data set. Aging Clinical and Experimental Research, 31(9), 1283–1297. https://doi.org/10.1007/s40520-018-1087-6

12.

Carr

Moorman

S. M.

Boerner

(2013). End-of-life planning in a family context: Does relationship quality affect whether (and with whom) older adults plan? Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 68(4), 586–592. https://doi.org/10.1093/geronb/gbt034

13.

Carver

C. S.

(1997). You want to measure coping but your protocol’s too long: Consider the brief COPE. International Journal of Behavioral Medicine, 4(1), 92–100. https://doi.org/10.1207/s15327558ijbm0401_6

14.

Charlson

M. E.

Pompei

Ales

K. L.

MacKenzie

C. R.

(1987). A new method of classifying prognostic comorbidity in longitudinal studies: Development and validation. Journal of Chronic Diseases, 40(5), 373–383. https://doi.org/10.1016/0021-9681(87)90171-8

15.

Cheung

D. S. K.

K. H. M.

Cheung

T. F.

Lam

S. C.

Tse

M. M. Y.

(2018). Anticipatory grief of spousal and adult children caregivers of people with dementia. BMC Palliative Care, 17(1), 124. https://doi.org/10.1186/s12904-018-0376-3

16.

Colclough

Miles

Rusted

Perach

Hicks

Dixon

Dangoor

Gridley

Birks

Donaghy

McArdle

Moseley

Sondh

H. K.

Banerjee

DETERMIND team . (2023). Emotion-focused dyadic coping styles used by family carers of people with dementia during the COVID-19 pandemic. Dementia, 22(6), 1205–1226. https://doi.org/10.1177/14713012231173812

17.

Crooks

Trotter

Clarke

(2023). How does ethnicity affect presence of advance care planning in care records for individuals with advanced disease? A mixed-methods systematic review. BMC Palliative Care, 22(1), 43. https://doi.org/10.1186/s12904-023-01168-7

18.

Cudjoe

T. K. M.

Boyd

C. M.

Wolff

J. L.

Roth

D. L.

(2020). Advance care planning: Social isolation matters. Journal of the American Geriatrics Society, 68(4), 841–846. https://doi.org/10.1111/jgs.16287

19.

Dao-Tran

T. H.

Yeoh

Comans

Karusoo-Musumeci

Auret

K. A.

Sinclair

Hilgeman

M. M.

Clayton

J. M.

Halcomb

Campbell

Meller

Walton

Kurrle

Sinclair

(2026). Factors associated with advance care planning engagement among community-dwelling older adults: A cross-sectional study. Journal of Clinical Nursing, 35(5), 2130–2139. https://doi.org/10.1111/jocn.17458

20.

Davies

J. M.

Sleeman

K. E.

Leniz

Wilson

Higginson

I. J.

Verne

Maddocks

Murtagh

F. E. M.

(2019). Socioeconomic position and use of healthcare in the last year of life: A systematic review and meta-analysis. PLoS Medicine, 16(4), Article e1002782. https://doi.org/10.1371/journal.pmed.1002782

21.

de Vries

Drury-Ruddlesden

(2019). Advance care planning for people with dementia: Ordinary everyday conversations. Dementia, 18(7-8), 3023–3035. https://doi.org/10.1177/1471301218764169

22.

Dickinson

Bamford

Exley

Emmett

Hughes

Robinson

(2013). Planning for tomorrow whilst living for today: The views of people with dementia and their families on advance care planning. International Psychogeriatrics, 25(12), 2011–2021. https://doi.org/10.1017/S1041610213001531

23.

Dixon

Damant

Stubbs

Hicks

Gridley

King

Miles

Banerjee

team

(2025). You like to be in control of your own destiny to a degree, don’t you?” Conscientious autonomy and planning for future care with dementia. BMC Palliative Care, 24, 137. https://doi.org/10.1186/s12904-025-01782-7

24.

Dixon

Hicks

Gridley

Perach

Baxter

Birks

Colclough

Storey

Russell

Karim

Tipping

Banerjee

DETERMIND Team . (2022). ‘Pushing back’: People newly diagnosed with dementia and their experiences of the Covid-19 pandemic restrictions in England. International Journal of Geriatric Psychiatry, 37(10). https://doi.org/10.1002/gps.5803

25.

Dixon

Karagiannidou

Knapp

(2018). The effectiveness of advance care planning in improving end-of-life outcomes for people with dementia and their carers: A systematic review and critical discussion. Journal of Pain and Symptom Management, 55(1), 132–150.e131. https://doi.org/10.1016/j.jpainsymman.2017.04.009

26.

Dixon

King

Matosevic

Clark

Knapp

(2015). Equity in the provision of palliative care in the UK. M. C. PSSRU.

27.

Dixon

Knapp

(2018). Whose job? The staffing of advance care planning support in twelve international healthcare organizations: A qualitative interview study. BMC Palliative Care, 17(1), 78. https://doi.org/10.1186/s12904-018-0333-1

28.

Dunn

O. J.

(1961). Multiple comparisons among means. Journal of the American Statistical Association, 56(293), 52–64. https://doi.org/10.1080/01621459.1961.10482090

29.

Farina

Hicks

Baxter

Birks

Brayne

Dangoor

Dixon

Harris

P. R.

Knapp

Miles

Perach

Read

Robinson

Rusted

Stewart

Thomas

Wittenberg

Banerjee

(2020). DETERMinants of quality of life, care and costs, and consequences of INequalities in people with dementia and their carers (DETERMIND): A protocol paper. International Journal of Geriatric Psychiatry, 35(3), 290–301. https://doi.org/10.1002/gps.5246

30.

Gallagher

Bolt

Tamiya

(2020). Advance care planning in the community: Factors of influence. BMJ Supportive & Palliative Care, 12, e345–e357. https://doi.org/10.1136/bmjspcare-2020-002221

31.

Gallagher

Bolt

Tamiya

(2022). Advance care planning in the community: Factors of influence. BMJ Supportive & Palliative Care, 12(e3), Article e345. https://doi.org/10.1136/bmjspcare-2020-002221

32.

Gotanda

Nuckols

T. K.

Lauzon

Tsugawa

(2022). Comparison of advance care planning and end-of-life care intensity between dementia versus cancer patients. Journal of General Internal Medicine, 37(13), 3251–3257. https://doi.org/10.1007/s11606-021-07330-2

33.

Hampel

Vergallo

Iwatsubo

Cho

Kurokawa

Wang

Kurzman

Chen

(2022). Evaluation of major national dementia policies and health‐care system preparedness for early medical action and implementation. Alzheimer’s & Dementia, 18(10), 1993–2002. https://doi.org/10.1002/alz.12655

34.

Han

Nam

(2020). The mediation role of socioeconomic status on racial and ethnic differences in advance care planning. Innovation in Aging, 4(Supplement_1), 333. https://doi.org/10.1093/geroni/igaa057.1068

35.

Hernandez

Jin

Lee

P. J.

Schneider

Junghaenel

D. U.

Stone

A. A.

Meijer

Gao

Maupin

Zelinski

E. M.

(2024). Attrition from longitudinal ageing studies and performance across domains of cognitive functioning: An individual participant data meta-analysis. BMJ Open, 14(3), Article e079241. https://doi.org/10.1136/bmjopen-2023-079241

36.

Hirschman

K. B.

Abbott

K. M.

Hanlon

A. L.

Prvu Bettger

Naylor

M. D.

(2012). What factors are associated with having an advance directive among older adults who are new to long term care services? Journal of the American Medical Directors Association, 13(1), 82.e87. https://doi.org/10.1016/j.jamda.2010.12.010

37.

Inoue

(2016). The influence of sociodemographic and psychosocial factors on advance care planning. Journal of Gerontological Social Work, 59(5), 401–422. https://doi.org/10.1080/01634372.2016.1229709

38.

Kalousová

Carr

(2024). Marital status and advance care planning among older adults: Do gendered patterns vary by age? Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 79(10), gbae141. https://doi.org/10.1093/geronb/gbae141

39.

Kermel Schiffman

Werner

(2021). Willingness of family caregivers of people with dementia to undertake advance care planning: Examining an extended model of the theory of planned behavior. Dementia, 20(3), 1044–1057. https://doi.org/10.1177/1471301220922761

40.

Khosla

Curl

A. L.

Washington

K. T.

(2016). Trends in engagement in advance care planning behaviors and the role of socioeconomic status. American Journal of Hospice and Palliative Medicine®, 33(7), 651–657. https://doi.org/10.1177/1049909115581818

41.

Kim

Hong

Buckley

(2020). Family caregiving situations and engagement in advance care planning. Journal of Palliative Medicine, 23(1), 125–128. https://doi.org/10.1089/jpm.2019.0091

42.

Krishnappa

Ludwick

Sompalle

Baughman

K. R.

(2023). Impact of chronic conditions, healthcare utilization, and demographics on advance care planning. American Journal of Hospice & Palliative Care, 40(4), 378–386. https://doi.org/10.1177/10499091221132286

43.

Lai

Jeon

Y. H.

McKenzie

(2019). 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. International Psychogeriatrics, 31(12), 1731–1746. https://doi.org/10.1017/s104161021900005x

44.

Lemos Dekker

Bolt

S. R.

(2022). Relating to the end of life through advance care planning: Expectations and experiences of people with dementia and their family caregivers. Dementia, 21(3), 918–933. https://doi.org/10.1177/14713012211066370

45.

Lewis

Rand

Mullaly

Mellor

Macfarlane

(2015). Uptake of a newly implemented advance care planning program in a dementia diagnostic service. Age and Ageing, 44(6), 1045–1049. https://doi.org/10.1093/ageing/afv138

46.

Lovell

Yates

(2014). Advance care planning in palliative care: A systematic literature review of the contextual factors influencing its uptake 2008-2012. Palliative Medicine, 28(8), 1026–1035. https://doi.org/10.1177/0269216314531313

47.

Lubben

Blozik

Gillmann

Iliffe

von Renteln Kruse

Beck

J. C.

Stuck

A. E.

(2006). Performance of an abbreviated version of the Lubben social network scale among three European community-dwelling older adult populations. Gerontologist, 46(4), 503–513. https://doi.org/10.1093/geront/46.4.503

48.

Lund

Richardson

May

(2015). Barriers to advance care planning at the end of life: An explanatory systematic review of implementation studies. PLoS One, 10(2), Article e0116629. https://doi.org/10.1371/journal.pone.0116629

49.

Malhotra

(2023). Advance care planning: It is time to rethink our goals. Journal of the American Geriatrics Society, 71(12), 3963–3966. https://doi.org/10.1111/jgs.18511

50.

Mansfield

Bryant

Nair

B. R.

Zucca

Pulle

R. C.

Sanson-Fisher

(2022). Optimising diagnosis and post-diagnostic support for people living with dementia: Geriatricians’ views. BMC Geriatrics, 22(1), 143. https://doi.org/10.1186/s12877-022-02814-0

51.

McDermott

Selman

L. E.

(2018). Cultural factors influencing advance care planning in progressive, incurable disease: A systematic review with narrative synthesis. Journal of Pain and Symptom Management, 56(4), 613–636. https://doi.org/10.1016/j.jpainsymman.2018.07.006

52.

McMahan

R. D.

Barnes

D. E.

Ritchie

C. S.

Jin

Shi

David

Walker

E. J.

Tang

V. L.

Sudore

R. L.

(2020). Anxious, depressed, and planning for the future: Advance care planning in diverse older adults. Journal of the American Geriatrics Society, 68(11), 2638–2642. https://doi.org/10.1111/jgs.16754

53.

McMahan

R. D.

Tellez

Sudore

R. L.

(2021). Deconstructing the complexities of advance care planning outcomes: What do we know and where do we go? A scoping review. Journal of the American Geriatrics Society, 69(1), 234–244. https://doi.org/10.1111/jgs.16801

54.

Miyashita

Yamamoto

Shimizu

Aoki

Azuma

Takada

Hayashi

Kimachi

Ikenoue

Fukuma

Fukuhara

(2019). Association between social networks and discussions regarding advance care planning among Japanese older adults. PLoS One, 14(3), Article e0213894. https://doi.org/10.1371/journal.pone.0213894

55.

Molloy

D. W.

Standish

T. I.

(1997). A guide to the standardized mini-mental state examination. International Psychogeriatrics, 9(Suppl 1), 87–94. https://doi.org/10.1017/s1041610297004754

56.

Moore

K. J.

Goodison

Sampson

E. L.

(2019). The role of the memory service in helping carers to prepare for end of life: A mixed methods study. International Journal of Geriatric Psychiatry, 34(2), 360–368. https://doi.org/10.1002/gps.5034

57.

Morris

J. C.

(1993). The Clinical Dementia Rating (CDR): Current version and scoring rules. Neurology, 43(11), 2412–2414. https://doi.org/10.1212/wnl.43.11.2412-a

58.

Nakanishi

Nakashima

Miyamoto

Yamasaki

Nishida

(2022). Family caregivers’ concerns about advance care planning for home-dwelling people with dementia: A cross-sectional observational study in Japan. BMC Palliative Care, 21(1), 114. https://doi.org/10.1186/s12904-022-01008-0

59.

National Institute for Health and Care Excellence . (2018). Dementia: Assessment, management and support for people living with dementia and their carers: NICE guideline [NG97].

60.

National Institute for Health and Care Excellence . (2019). End of life care for adults: Service delivery. NICE guideline: Reference number: NG142.

61.

Nouri

Lyles

Rubinsky

A. D.

Patel

Desai

Fields

DeRouen

M. C.

Volow

Bibbins-Domingo

Sudore

R. L.

(2020). Evaluation of neighborhood socioeconomic characteristics and advance care planning among older adults. JAMA Network Open, 3(12), e2029063. https://doi.org/10.1001/jamanetworkopen.2020.29063

62.

Pearson

(1992). On the criterion that a given system of deviations from the probable in the case of a correlated system of variables is such that it can be reasonably supposed to have arisen from random sampling. In Kotz

Johnson

N. L.

(Eds.), Breakthroughs in statistics: Methodology and distribution (pp. 11–28). Springer. https://doi.org/10.1007/978-1-4612-4380-9_2

63.

Pettigrew

Brichko

Black

O'Connor

M. K.

Austrom

M. G.

Robinson

M. T.

Lindauer

Shah

R. C.

Peavy

G. M.

Meyer

Schmitt

F. A.

Lingler

J. H.

Domoto-Reilly

Farrar-Edwards

Albert

(2020). Attitudes toward advance care planning among persons with dementia and their caregivers. International Psychogeriatrics, 32(5), 585–599. https://doi.org/10.1017/s1041610219000784

64.

Phenwan

Sixsmith

McSwiggan

Buchanan

(2025). A relational approach to co-create advance care planning with and for people living with dementia: A narrative study. BMC Palliative Care, 24(1), 5. https://doi.org/10.1186/s12904-024-01632-y

65.

Rietjens

J. A. C.

Sudore

R. L.

Connolly

van Delden

J. J.

Drickamer

M. A.

Droger

van der Heide

Heyland

D. K.

Houttekier

Janssen

D. J. A.

Orsi

Payne

Seymour

Jox

R. J.

Korfage

I. J.

European Association for Palliative Care . (2017). Definition and recommendations for advance care planning: An international consensus supported by the European association for palliative care. Lancet Oncology, 18(9), e543–e551. https://doi.org/10.1016/s1470-2045(17)30582-x

66.

Ryan

(2020). Evidence of engagement with advance care planning for people affected by dementia in the United States. International Psychogeriatrics, 32(5), 547–549. https://doi.org/10.1017/S1041610219001820

67.

Ryan

Amen

K. M.

McKeown

(2017). The advance care planning experiences of people with dementia, family caregivers and professionals: A synthesis of the qualitative literature. Annals of Palliative Medicine, 6(4), 380–389. https://doi.org/10.21037/apm.2017.06.15

68.

Sanders

J. J.

Robinson

M. T.

Block

S. D.

(2016). Factors impacting advance care planning among African Americans: Results of a systematic integrated review. Journal of Palliative Medicine, 19(2), 202–227. https://doi.org/10.1089/jpm.2015.0325

69.

Scheier

M. F.

Carver

C. S.

Bridges

M. W.

(1994). Distinguishing optimism from neuroticism (and trait anxiety, self-mastery, and self-esteem): A reevaluation of the life orientation test. Journal of Personality and Social Psychology, 67(6), 1063–1078. https://doi.org/10.1037//0022-3514.67.6.1063

70.

Sellars

Chung

Nolte

Tong

Pond

Fetherstonhaugh

McInerney

Sinclair

Detering

K. M.

(2019). Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies. Palliative Medicine, 33(3), 274–290. https://doi.org/10.1177/0269216318809571

71.

Sleeman

K. E.

Sampson

(2022). EMBED-care public opinion poll. https://www.ucl.ac.uk/psychiatry/sites/psychiatry/files/2022_embed-care_yougov_poll.pdf

72.

Smith

S. C.

Lamping

D. L.

Banerjee

Harwood

R. H.

Foley

Smith

Cook

J. C.

Murray

Prince

Levin

Mann

Knapp

M..

Development of a new measure of health-related quality of life for people with dementia: DEMQOL. Psychol Med. 2007 May;37(5):737-746. https://doi.org/10.1017/S0033291706009469. Epub 2006 Dec 19. PMID: 17176501.

73.

Song

Zhi

Chang

Sun

Gao

Sun

(2024). Experiences and perspectives on the optimal timing for initiating advance care planning in patients with mild to moderate dementia: A meta-synthesis. International Journal of Nursing Studies, 154, 104762. https://doi.org/10.1016/j.ijnurstu.2024.104762

74.

StataCorp . (2023). Stata statistical software: Release 18.5. StataCorp LLC.

75.

Sussman

Pimienta

Hayward

(2021). Engaging persons with dementia in advance care planning: Challenges and opportunities. Dementia, 20(6), 1859–1874. https://doi.org/10.1177/1471301220973059

76.

Tetrault

Nyback

M. H.

Vaartio-Rajalin

Fagerström

(2022). Advance care planning in dementia care: Wants, beliefs, and insight. Nursing Ethics, 29(3), 696–708. https://doi.org/10.1177/09697330211035498

77.

Tilburgs

Vernooij-Dassen

Koopmans

van Gennip

Engels

Perry

(2018). Barriers and facilitators for GPs in dementia advance care planning: A systematic integrative review. PLoS One, 13(6), Article e0198535. https://doi.org/10.1371/journal.pone.0198535

78.

Van den Block

(2019). Advancing research on advance care planning in dementia. Palliative Medicine, 33(3), 259–261. https://doi.org/10.1177/0269216319826411

79.

van der Steen

J. T.

Nakanishi

Van den Block

Di Giulio

Gonella

der Schmitten

Sudore

R. L.

Harrison Dening

Parker

Mimica

Holmerova

Larkin

Martins Pereira

Rietjens

J. A. C.

Korfage

I. J.

European Association for Palliative Care (EAPC) (2024). Consensus definition of advance care planning in dementia: A 33-country Delphi study. Alzheimer’s & Dementia, 20(2), 1309–1320. https://doi.org/10.1002/alz.13526

80.

van der Steen

J. T.

Onwuteaka-Philipsen

B. D.

Knol

D. L.

Ribbe

M. W.

Deliens

(2013). Caregivers’ understanding of dementia predicts patients’ comfort at death: A prospective observational study. BMC Medicine, 11(1), 105. https://doi.org/10.1186/1741-7015-11-105

81.

van der Steen

J. T.

Radbruch

Hertogh

C. M.

de Boer

M. E.

Hughes

J. C.

Larkin

Francke

A. L.

Jünger

Gove

Firth

Koopmans

R. T.

Volicer

European Association for Palliative Care EAPC . (2014a). White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European association for palliative care. Palliative Medicine, 28(3), 197–209. https://doi.org/10.1177/0269216313493685

82.

van der Steen

J. T.

van Soest-Poortvliet

M. C.

Hallie-Heierman

Onwuteaka-Philipsen

B. D.

Deliens

de Boer

M. E.

Van den Block

van Uden

Hertogh

C. M.

de Vet

H. C.

(2014b). Factors associated with initiation of advance care planning in dementia: A systematic review. Journal of Alzheimer’s Disease, 40(3), 743–757. https://doi.org/10.3233/jad-131967

83.

Visser

Smaling

H. J. A.

Parker

van der Steen

J. T.

(2022). How do we talk with people living with dementia about future care: A scoping review. Frontiers in Psychology, 13, 849100. https://doi.org/10.3389/fpsyg.2022.849100

84.

von Elm

Altman

D. G.

Egger

Pocock

S. J.

Gøtzsche

P. C.

Vandenbroucke

J. P.

STROBE Initiative . (2007). Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: Guidelines for reporting observational studies. BMJ, 335(7624), 806–808. https://doi.org/10.1136/bmj.39335.541782.AD

85.

Wendrich-van Dael

Bunn

Lynch

Pivodic

Van den Block

Goodman

(2020). Advance care planning for people living with dementia: An umbrella review of effectiveness and experiences. International Journal of Nursing Studies, 107, 103576. https://doi.org/10.1016/j.ijnurstu.2020.103576

86.

Zarit

S. H.

Reever

K. E.

Bach-Peterson

(1980). Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist, 20(6), 649–655. https://doi.org/10.1093/geront/20.6.649

87.

Zhai

Liu

Dai

Chen

(2024). Factors influencing dementia patients’ participation in advance care planning: A meta-analysis. Geriatric Nursing, 60, 469–480. https://doi.org/10.1016/j.gerinurse.2024.10.014

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.08 MB