Thematic Analysis of Dyadic Coping in Couples With Young-Onset Dementia

Abstract

IMPORTANCE A diagnosis of young-onset dementia (YOD) is a life-altering event for both persons with dementia and their spousal caregivers. Dyadic coping (DC) theoretical models acknowledge that dyads cope with stressors as a unit, but these models have yet to be used in YOD.OBJECTIVE To explore the lived experiences of couples managing YOD using an integrated DC model. DESIGN, SETTING, AND PARTICIPANTSThis qualitative study recruited couples from a single major medical setting and through social media. Eligibility criteria included cohabitation, 1 partner diagnosed with YOD and able to participate, and both partners willing to participate. Live online video interviews were conducted from March to June 2020. EXPOSURES One semistructured interview, which was recorded and subsequently transcribed.Recruitment was stopped once thematic saturation was reached. MAIN OUTCOMES AND MEASURESFive themes were deductively derived based on the integrated DC framework, including stress communication, positive individual DC, positive conjoint DC, negative individual DC, and negative conjoint DC. Within each theme, subthemes were inductively identified to further characterize couples' dyadic coping experiences with YOD. RESULTS A total of 23 couples were interviewed, comprising persons with dementia (11 women [48%]; mean [SD] age, 61.3 [4.65] years; mean [SD] time from diagnosis, 3.11 [3.85]) years; and spousal caregivers (13 women [57%]; mean [SD] age, 60.5 [5.40] years). Data supported the 5 apriori DC themes and novel subthemes describing couples' experiences with YOD. Specifically, couples enacted positive conjoint DC by approaching challenges using a teamwork approach to problem solving and relying on collaborative communication. In contrast, couples engaged in negative conjoint DC through mutual avoidance, leading to increased negative communication and conflict. Couples described initially engaging in avoidance and withdrawal to navigate YOD-related stressors. While these strategies provided short-term relief from challenging emotions, they prevented engagement in adaptive coping (eg, acceptance and collaborative problem-solving) to promote long-term adjustment. CONCLUSIONS AND RELEVANCEThis study used an evidence-based integrated DC approach to identify the positive and negative coping behaviors of couples managing YOD. To our knowledge, this is the first study to use a DC framework to guide qualitative analysis, and it provides valuable insights into DC strategies used by couples navigating YOD-related stressors. Findings can inform the development of dyadic psychosocial services for couples managing YOD and have implications for other progressive illnesses.

The Strategies for Quantitative and Qualitative Remote Data Collection: Lessons From the COVID-19 Pandemic

“…In the case of challenges that cannot be solved within a reasonable amount of time, study staff should have backup strategies in place to conduct interviews over the phone, allow participants to join focus groups by phone, or reschedule meetings flexibly. These procedures were used in qualitative interviews with patients with young-onset dementia and their caregivers [ 30 ], as well as in focus groups with orthopedic medical providers to enable the recruitment of geographically diverse participants.…”

The protective effect of mindfulness and compassion meditation practices on ageing: Hypotheses, models and experimental implementation

“…The training in emotional balance is particularly relevant for ageing as purpose in life and personal growth usually decrease with ageing, and high levels of purposeful life engagement predict extended longevity, reduced physiological dysregulation, and gene expression linked to better inflammatory profiles (Ryff et al, 2016, p. 201). In addition, while both LKCM and MM strengthen the capacities to embrace stressors (see Table 1), the emphasis of the others' care and wellness in LKCM training could be particularly relevant to cope with the dyadic stressors for instance between a person diagnosed with a young-onset dementias and a spousal caregiver (see Table 1 and ( Bannon et al, 2021)). While there is evidence that MM-based interventions train implicitly some processes related to LKCM (Donald et al, 2019), some recent evidence from affective neurosciences argue for supplementing these programs with an explicit training in LKCM.…”

“…In the Age-Well meditation intervention, this mechanism is mainly trained with LKCM-related exercises such as the cultivation of acceptation, appreciation and loving-kindness toward one's mind-wandering episodes, one's physical pain, one's ageing body, one's thoughts and emotions; LKCM is then cultivated for one-self, for a loved one, for a neutral person, a difficult person and for all beings. Again, these exercises are integrated in daily life and in particular with the personal and dyadic challenges of ageing (Bannon et al, 2021).…”

Together from the start: A transdiagnostic framework for early dyadic interventions for neurodegenerative diseases

“…Care partners may feel a responsibility to ensure that their partner engages with care, accepts the diagnosis, and plans for the future 11,12,14 . With these conflicting experiences, dyad members are often at odds—disagreeing about symptoms and illness management —which can isolate each partner 8,12 . Individuals with NDDs often fear losing their independence (e.g., working, driving, socializing), identities/roles (e.g., parent, partner), and connection to family and friends 15 .…”

“…Though some dyads engage resources, communicate openly or collaboratively problem‐solve, 5,6,8 others turn to less helpful coping strategies, such as avoidance or denial. They then experience a “downward spiral” of early challenges that impact long‐term illness management 8,11 . Early support for dyads is critical for the following: (1) improve dyads' ability to proactively communicate about difficult emotions and topics (e.g., finances, long‐term care, the impact of the diagnosis and symptoms), (2) prevent further distress, relationship strain and conflict, and (3) promote positive adjustment 12 .…”