Guided Psychosocial Interventions Needed for Couples Affected by Young-onset Dementia
Key findings
- 23 couples in which one partner was diagnosed with young-onset dementia were interviewed to understand their individual and shared coping patterns
- Individuals and couples endorsed that avoidance initially provided short-term relief, but ultimately increased stress and disagreements
- Caregiving spouses described being overprotective and providing excessive support to their partner with dementia, which often led to miscommunication and relationship strain
- Some couples said that they learned to communicate explicitly about their individual stressors, which led to more positive coping relative to those who engaged in avoidance
- There is an urgent need for dyadic interventions that promote communication and adaptive coping among couples managing young-onset dementia
Young-onset dementias (YOD) make up about 5% of dementias and symptoms can emerge in adults 30 to 60 years old. They often present with atypical symptoms and have a more rapid progression compared with dementias diagnosed later in life. YODs are disruptive to the lifestyle as they occur when adults are typically in good health, employed, parenting or supporting older parents. Patients and their spousal caregivers report high levels of depression and anxiety. Despite increasing rates of dementias and the stress on younger couples, their experience managing this progressive illness is understudied. As a result, age-appropriate and couples-based resources are extremely limited.
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Sarah M. Bannon, PhD, clinical psychologist and postdoctoral fellow, Ana-Maria Vranceanu, PhD, founding director of the Integrated Brain Health Clinical and Research Program and faculty member of the Henry and Allison McCance Center for Brain Health, and Bradford C. Dickerson, MD, director of the Frontotemporal Disorder Unit at Massachusetts General Hospital, and colleagues conducted the first qualitative study to examine dyadic coping after YOD diagnosis. Dyadic coping models describe how couples or other dyads respond to stressors in interdependent ways and can help inform couples-based interventions.
In JAMA Network Open, the researchers provide an overview of positive and negative dyadic coping in couples after YOD diagnosis and suggest how interventions might help both partners cope.
Study Methods
23 cohabitating couples in romantic relationships (22 male–female, one female–female) were recruited from the Mass General Department of Neurology clinics and through social media support groups. They had been together for an average of 34 years.
A clinical psychologist conducted an hour-long semistructured joint interview with each couple via teleconference between March and June 2020. Between July and September 2020, the research team derived themes from interview transcripts.
Theme 1: Content and Experience of Stress
Couples described the importance of discussing stressors together including how to manage symptom progression, medical care and patients' safety in performing daily tasks. Other stressors included stigma of having dementia at a young age, disclosing the diagnosis to social networks, and managing loved ones' emotional reactions. Many experienced relationship stress—often a result of partners' different understandings and preferences about symptoms, role changes and future plans.
Theme 2: Positive Individual Coping
Couples described trying to engage in positive individual strategies to cope with YOD-related challenges. Specifically, some spouses provided support to patients by helping to promote their identity throughout the illness (e.g., make statements such as "He's still him") and communicate with others (e.g., asking clarifying questions, assisting with wordfinding, using shorter sentences, repeating statements, giving patients time to finish sentences). Spouses also provided support to patients in daily activities (e.g., detailed instructions for chores) and were active in managing their medical care.
Both patients and spouses described "picking their battles" during disagreements about symptoms and care. They also provided support to their partner when they had overwhelming emotions related to illness and future.
Theme 3: Positive Conjoint Coping
Couples explained that when they approached problems collaboratively (e.g., planning for the future, establishing short-term routines), this was positive for their relationship. Many couples engaged in positive health behaviors together (e.g., yoga, walking) to try to slow symptom progression. Positive couple communication strategies included collaboratively deciding when to have difficult conversations, pausing discussions if one or both partners feel overwhelmed and having challenging discussions during ongoing routines (e.g., dinners, walks).
Theme 4: Negative Individual Coping
After YOD diagnosis, most couples avoided sharing difficult emotions and individual concerns. Not wanting to burden each other, couples tended to avoid discussions about challenging topics (e.g., YOD prognoses, long-term care planning). Partners' desires to protect each other sometimes led to relationship strain (e.g., mind-reading partners' concerns, making assumptions about level of support needed).
Spouses tended to use overprotective or controlling behaviors such as closely monitoring daily tasks or offering excessive support. Some spouses restricted patients from engaging independently in daily activities given their concerns. Patients said that behaviors tended to reduce their self-efficacy and increase feelings of sadness, frustration and relationship conflict.
Theme 5: Negative Conjoint Coping
After diagnosis, many couples described "walking on eggshells" around each other and engaging in mutual avoidance of difficult topics. Given the uncertainty of symptom progression, they often felt unprepared for conversations about the future. They also felt unsure about how to discuss individual stress and emotions, changing roles and responsibilities and the impact of YOD on their future. While avoidance helped them manage distress in the short-term, couples explained that mutual avoidance led to an accumulation of frustration that contributed to negative communication such as lashing out at each other.
Urgent Need for Tailored Interventions
Given the rapid advances in biomarker research that enable clinicians to make earlier and more confident YOD diagnoses, there is increasing potential to involve persons with YOD in interventions with their spouses when they are still able to meaningfully engage in the program together.
Dyadic interventions that use education and skills practice have been developed for other neurologic conditions. They help prevent long-term emotional distress and preserve well-being for both partners and the relationship. These interventions are needed for couples who recently received a diagnosis of YOD as they may can help promote positive coping strategies. For example, emotion regulation and interpersonal effectiveness skills could help couples manage difficult emotions, communicate needs, work together to manage medical care, adjust to a new normal and plan their time and future together.
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