Persons living with dementia and multiple chronic conditions identifying health priorities with care partners

INTRODUCTION

Many older persons living with dementia (PLWD) have multiple chronic conditions (MCCs) in addition to dementia.¹ Their care partners (i.e., family or friends who provide regular care) will increasingly need to make care decisions for PLWD as their disease progresses.² Persons living with MCCs vary in their health priorities—the outcomes most desired given the healthcare they are willing and able to receive. No process has been tailored to introduce care partners to the health priorities of PLWD with MCCs early in their disease course. Such a process would better prepare care partners to support care decision-making consistent with PLWDs' health priorities as dementia progresses.

The Patient Priorities Care Health Priorities Identification Process (HPIP) is an evidence-based tool shown to support cognitively intact older adults with MCCs to identify and communicate their health priorities.^3,4 The HPIP guides individuals to consider what matters most about their health and healthcare in the face of trade-offs (e.g., improved function versus burdensome treatment; see Figure 1). Aligning care with each person's health priorities improves patient outcomes (e.g., increased priorities-concordant clinical decisions, decreased treatment burden).⁵

FIGURE 1.

Components of the healthcare priorities identification process. Care partners were present while the study facilitator walked the person living with dementia (PLWD) through the process and were asked to confirm that they heard what the PLWD said after each step.

The objective of the present pilot study was to examine PLWDs' and care partners' perspectives on participating in a guided HPIP that emphasized care partners' involvement through active listening and checking for understanding. This approach was chosen to keep the PLWD's voice centered while allowing the care partner to hear and understand the PLWD's health priorities.

METHODS

We recruited dementia care dyads in the early stages of dementia. Drawing on existing caregiving conversation guides⁶ and family systems theory,⁷ we adapted the HPIP to include a trained interventionist guiding the PLWD while the care partner engaged as an active listener. After the HPIP, the PLWD and care partner reviewed the HPIP summary, and the care partner acknowledged their understanding of the summary. Following this, we asked dyads to openly describe (a) how they felt, (b) what they liked, and (c) any challenges they experienced in engaging with the HPIP. Two coders used thematic analysis to examine their responses.⁸

RESULTS

Five dyads (N = 10) participated in the pilot study: Three dyads were spouses and two were parent–child dyads. The PLWD ranged in age from 70 to 83 years; three were women and two were men, and they had a range of three to eight chronic conditions in addition to dementia. Care partners ranged from 39 to 78 years of age.

See Table 1 for themes and illustrative quotes. Thematic analyses demonstrated that PLWD had no major issues completing the HPIP. PLWD enjoyed the process and appreciated having their care partner present. Care partners also valued the process and felt it was relatively simple. They were able to maintain their roles as quiet, active listeners, although in some cases they reported resisting impulses to correct the PLWD. Care partners described that the process helped them recognize that the PLWD were invested in and able to articulate their own health goals, rather than being passive healthcare recipients. In some instances, care partners had previously formed assumptions about what matters most to the PLWD, and this process corrected those inaccurate assumptions. While both members of dyads felt the process was helpful for identifying health priorities, there were concerns about the limited resources and motivation available to achieve health goals. The interventionist had to reiterate that the HPIP was for generating health priorities and becoming aware of what mattered most to the PLWD rather than following through with any health-related actions.

TABLE 1.

Themes of participants' perspectives and representative quotes.

Theme	Representative quote(s)
Person living with dementia (PLWD)
Enjoyable process	“I liked everything that we talked about.” Dyad 5 PLWD
Benefit from including care partner	“I like very much having [my daughter] here as a part of this process. It's extremely helpful.”Dyad 1 PLWD
Care partners
Simple and valuable process	“It was a doable thing that I can participate in.” Dyad 1 Care Partner “One of the parts I found the most helpful was the first values-clarification exercise, the four areas that you prioritize. it's helpful to know [that] Mom [is still] really interested in Church, like ‘Oh, I can ask around about Catholic churches around here.’ We do not often have chit chats about anyone's most important values, so I thought that part was really helpful.” Dyad 4 Care Partner “[I liked] that I can do it while I'm lying on my bed (laughs).” Dyad 5 Care Partner
Recognition of care recipient's investment in their own health	“She had to make decisions. She had to think things through and classify [what was] most important so that she was engaged in it.” Dyad 2 Care Partner “I think it's great that he even thinks about [his health priorities] as opposed to saying, ‘no, nothing matters’… that he actually thinks of something like that, I think is extremely positive. Cause I remember going, ‘woah.’” Dyad 3 Care Partner
Wanting to interject when care recipient is talking	“You just know your family, so, I could hear her struggling with trying to connect the dots and just wanting to like jump in.” Dyad 1 Care Partner “There were a couple places where I had the urge to jump in… keeping [my] mouth shut is probably the most challenging thing, but it was really helpful to be quiet because [the PLWD] does not always need someone else chiming in.” Dyad 4 Care Partner
Barriers to next steps for achieving health goals and decision-making	“It might be helpful to know the purpose of the end of the exercise when you start the exercise. Towards the beginning of the exercise, I wasn't sure where we were headed in the end. I felt like I was clear on that goal but not really clear on what we do about the progression of [Mom's health conditions] …you get left with like ‘…and now what?’ [There's an] absence of the piece connecting it to an action plan or next step.” Dyad 4 Care Partner “We both realized that we have limited energy and time and, well, functions.” Dyad 5 Care Partner

DISCUSSION

Involving care partners in health priorities identification is essential to aligning care decisions with these priorities, particularly when PLWD are likely to need a surrogate decision maker in the future. Our findings demonstrate the feasibility, value, and acceptability of a guided priority identification process for PLWD where care partners actively listen to the PLWD without interjecting. Making care partners aware of the PLWD's health priorities early in the dementia course may better prepare them to be care proxies and lead to a reduction in the PLWDs' unwanted care. In some cases, care partners had concerns about the next steps to take to achieve the PLWD's identified healthcare goal. This finding highlights the importance of preparing care dyads to discuss the PLWD's priorities with their clinicians. Future research should examine whether this process leads to better medical, psychological, and behavioral outcomes for these care dyads (e.g., goal-concordant care, prepared surrogate decision-making).