Assessing what matters most to patients with or at risk for Alzheimer’s and care partners: a qualitative study evaluating symptoms, impacts, and outcomes

Abstract

Background The What Matters Most (WMM) study was initiated to evaluate symptoms, AD-related impacts, treatment-related needs, preferences, and priorities among individuals with or at risk for Alzheimer’s disease (AD) and their care partners. The objective of this qualitative study phase was to identify a comprehensive set of concepts of interest that are meaningful to individuals across the AD continuum. Methods Interviews were conducted with 60 clinically referred individuals and care partners across 5 AD stages ( n = 12 each): group 1 (non-clinically impaired individuals with AD pathology), group 2 (individuals with mild cognitive impairment and AD pathology), group 3 (individuals with mild AD), group 4 (individuals with moderate AD and their care partners), and group 5 (care partners of individuals with severe AD). Interviews were conducted by experienced interviewers, audio-recorded, and transcribed. Dominant trends were identified in each interview and compared across subsequent interviews to generate themes or patterns in descriptions of AD symptoms, impacts, and desired treatment outcomes. Results All participants endorsed current issues related to memory; nearly all participants ( n = 55; 92%) across the five groups endorsed symptoms related to communication and language. Groups 1–3 reported an impact on mood/emotions ( n = 23; 64%) and a decrease in social activities or outgoingness ( n = 17; 47%). Current and future concerns reported by the overall sample included memory ( n = 48; 80%), dependence ( n = 40; 67%), and “other” concerns ( n = 33; 55.0%) (e.g., uncertainty about the future, burdening others). The most desired AD treatment outcomes were improvement or restoration of memory ( n = 40; 67%) and stopping AD progression ( n = 35; 58.3%). Group-level differences were observed in the symptoms, impacts, and desired treatment outcomes among patients and care partners across the AD continuum. Conclusions Cognitive functioning issues—particularly in memory and communication—are present even in preclinical and early-stage AD, including among those without a formal AD diagnosis. While the impacts of AD vary across the disease-severity spectrum, improved memory and disease modification were treatment outcomes considered most important to participants across all 5 AD stages. Neuropsychological assessments traditionally used in AD clinical trials may not evaluate the often-subtle concepts that are important to patients and care partners. Results from this study will inform the second phase of the WMM project—a quantitative study to elicit the relative importance of these concepts of interest to people at risk for and living with AD and their care partners.

Awareness of Diagnosis in Persons with Early-Stage Alzheimer’s Disease: An Observational Study in Spain

“…Different studies have shown that persons with AD are still able to describe their problems, experiences, and preferences at different stages of the disease [ 10 , 14 , 15 ]. In a qualitative and quantitative study with mild and moderate AD persons, Trindade et al found that awareness of condition was more preserved than awareness of specific functional deficits [ 10 ].…”

“…AD care should focus on person-centered outcomes [ 14 , 15 ]. Maintaining autonomy and quality of life based on persons’ preferences and beliefs is essential, especially in the early stage of the disease when decision-making capacity is less impaired [ 14 – 16 ].…”

“…AD care should focus on person-centered outcomes [ 14 , 15 ]. Maintaining autonomy and quality of life based on persons’ preferences and beliefs is essential, especially in the early stage of the disease when decision-making capacity is less impaired [ 14 – 16 ]. The aim of this study was to assess awareness of diagnosis among persons with early-stage AD and its impact on different psychological and behavioral dimensions.…”

Identifying relevant outcomes in the progression of Alzheimer's disease; what do patients and care partners want to know about prognosis?

“…Outcomes that we did not replicate are eating behaviors, apathy, and self‐efficacy in the ability to manage memory impairment. In addition, a recent qualitative study examined what matters most to patients and care partners across the AD continuum, by means of interviews only 25 . They also observed that memory (e.g., forgetting friends/family) was reported as one of the most challenging issues by the majority of the participants.…”

Toward a broader concept of societal value: family spillovers in Alzheimer's disease

“…The Alzheimer's Association reports that twice as many caregivers of those with dementia compared with caregivers of people without dementia indicate substantial emotional and physical difficulties (18). In fact, 66.7 percent of caregivers evaluated in the What Matters Most (WMM) study reported that their physical health had suffered (25). Caregivers of people with dementia also have a higher prevalence of anxiety and depression (anxiety: 44%, depression: 30–40%) compared with caregivers of individuals with stroke (anxiety: 31%, depression: 19%) (18).…”