Disentangling factors that influence the spousal relationship of people with young-onset dementia: Starting points for person-centered care and support?

There is increasing awareness of the fact that people living with Young-Onset Dementia (YOD; symptoms before the age of 65), including those who support and care for persons with YOD, face different challenges than those living with late-onset dementia. YOD occurs at a period in life during which individuals and their caregivers are likely to be at their maximal earning capacity, be physically active, are caring for (young) children, and have financial responsibilities (Kang et al., 2022). Many spouses are therefore faced with challenges that link to becoming the primary cost winner, responsible parent, and primary caregiver all at once (Hendriks et al., 2021). Other challenges faced in people with YOD include significant delays in the diagnostic process (Lambert et al., 2014), faster disease progression, and atypical clinical presentations with a higher prevalence of neuropsychiatric symptoms (van Vliet et al., 2013). Neuropsychiatric symptoms including aggression, apathy, disinhibition, and changes in socio-emotional behavior are associated with higher levels of burden on caregivers (Eikelboom et al., 2022). At the same time, people with YOD tend to live longer at home (Bakker et al., 2013). These specific challenges do not only impact the burden and distress experienced by spouses but may also affect the quality of the spousal relationship. Tailored care and support focused on characteristics and symptoms of people with YOD, their spouses, and their relationship may positively affect caregiver distress and quality of life, and empower the caregiver in caring for the person with YOD at home longer.

Previous studies have shown that spouses of people with YOD experience changes in the quality of the relationship due to changes in mood, behavior, daily functioning, sexuality, shifting roles and responsibilities, a decline in reciprocity, and social isolation (e.g. Kimura et al., 2015; Lockeridge and Simpson, 2013; Massimo et al., 2013). However, to date most studies have been of qualitative nature or included small sample sizes, and most did not specifically target the quality of the relationship itself, but general caregiver experiences (Holdsworth and McCabe, 2018). In contrast, Bruinsma et al., 2020 report unique quantitative data from a large longitudinal cohort study including 178 dyads, revealing that spouses of people with YOD experience a small, though significant, deterioration in their perceived quality of the relationship over 24 months and that this deterioration was associated with characteristics of both the person with YOD and the spouse. In-depth analyses revealed that experienced feelings of emotional closeness, satisfaction with communication, and satisfaction with sharing views deteriorated, but not that getting along was influenced. These results correspond with earlier qualitative findings indicating that spouses of people with YOD perceive a deterioration in the quality of the relationship over time. However, it has to be acknowledged that the absolute average deterioration was relatively small and the quality of the relationship was still graded as satisfactory over the course of the disease. Indeed, previous studies have demonstrated that the quality of the relationship does not necessarily decline, but in some cases can even improve, as is illustrated by the following quote from a spouse of a person with YOD: “I think it [having AD] has brought us closer together. Maybe closer than ever before because of what we have gone through.” (Harris, 2004). Bruinsma et al., 2020 provide the explanation that over time spouses may learn to come to terms with the situation and develop a positive attitude towards their caregiving role. Although there are some studies that support this claim (Lloyd et al., 2016; Lockeridge and Simpson, 2013), it may also be due to methodological limitations. For example, there appears to be a lack of validated instruments to assess the quality of personal relationships, and although the authors state this in their discussion, the question remains whether the quality of any personal relationship can be quantified or expressed in a number, as relationships have many different dimensions, is inherently subjective, and is potentially not universally measured by the same criteria.

Bruinsma et al., 2020 are one of the first to demonstrate statistically significant associations between the decline in the perceived quality of the relationship and several characteristics of persons with YOD and spouses. They showed that a longer symptom duration, a diagnosis of frontotemporal dementia, lower levels of awareness of deficits, lower levels of initiative toward daily activities, and higher levels of apathy, hyperactivity, depression, and anxiety in the person with YOD were associated with a lower perceived quality of the relationship by spouses. A coping style characterized by palliative and passive reacting patterns and higher levels of neuroticism in spouses was also associated with a lower quality of the relationship. In our view, these results of Bruinsma et al., 2020 have important clinical implications by highlighting important targets that can be addressed in person-centered post-diagnostic care, i.e. care immediately following the diagnosis that is tailored to the specific characteristics and symptoms of the person with YOD and their caregiver. One such target should focus on helping spouses to come to terms with factors that threaten their sense of couplehood and caregiving role.

There are several limitations that need to be addressed in further research studies before incorporating these results in a clinical framework. First, Bruinsma et al., 2020 investigated the association between baseline characteristics and the decline in the perceived quality of the relationship. Although some characteristics are presumably static over time, e.g. neuroticism, coping style, and diagnosis, neuropsychiatric symptoms are not. For example, several studies have demonstrated that neuropsychiatric symptoms such as anxiety, depression, and apathy fluctuate over time during the disease process, even on a bi-weekly or daily basis (Cerasoli et al., 2019; Eikelboom et al., 2022). Secondly, views of the person with YOD regarding the quality of the relationship were not taken into account in the study by Bruinsma et al. (2020). In the context of incorporating a module on the spousal relationship into clinical frameworks for person-centered care and post-diagnostic care, it would first be insightful to extend the findings from Bruinsma et al. (2020) by investigating how the fluctuating nature of neuropsychiatric symptoms relates to the perceived quality of the spousal relationship by both the person with YOD and their spouse.

Due to the burden that spouses of individuals with dementia bear, they are commonly referred to in literature as the “invisible second patient” and should be actively involved in the post-diagnostic care provided to those with YOD. Until an effective treatment for YOD becomes available, the diagnosis will inevitably have devastating consequences for persons with YOD and their spouses, however, providing tailored support immediately following the diagnosis can help spouses in navigating the shifting dynamics and roles within their relationship and focusing on the positive and enduring aspects that remain (Boots et al., 2015). Furthermore, it can help spouses in identifying their own needs, provide guidance on where to seek additional support, and prevent or reduce caregiver burden (de Vugt and Verhey, 2013). This could increase well-being and quality of life and potentially empower them to care for their spouse longer. The need for tailored early support is befittingly illustrated in a quote from a caregiver in Boots et al.’s (2015) research: “I would have liked to have received some information that was important for me at that moment. I hear a lot of different stories and some do apply to our situation but others really don't. It’s all so different and it needs to be relevant for your situation at that specific time.” Unfortunately, according to the World Alzheimer Report (2022), 37% of people living with dementia in higher-income countries and 45% of people living with dementia in lower-income countries have not been offered post-diagnostic support directly following the diagnosis (Gauthier et al., 2022). Additionally, when care or support for YOD is provided, it is frequently tailored to the needs of older individuals with dementia, resulting in a mismatch with the needs of those with YOD and their families (Bakker et al., 2010; Withall, 2013). Moreover, existing models for post-diagnostic support often do not prioritize the quality of the relationship and few studies have explored interventions aimed at preserving the relationship (Colloby et al., 2022; Mayrhofer et al., 2018). Yet, the recommendations outlined in the World Alzheimer Report of 2022 emphasize the urgent need for governments to establish robust models of post-diagnostic support, placing a strong emphasis on person-centered care and prioritizing the provision of support for caregivers (Gauthier et al., 2022).

Based on the results of Bruinsma et al. (2020), we emphasize the importance for healthcare professionals to consider the factors that influence the quality of the person living with dementia’s relationships in the early stages of the disease. Memory clinics have a unique opportunity to provide this form of care immediately following the diagnosis of YOD, in which they should conceptualize both the person with YOD and their spouse as a collective “patient.” Additional studies are essential to determine the most effective approach for providing this type of support. In the Netherlands, the establishment of the Young-Onset Dementia-INCLUDED (YOD-INCLUDED) consortium signifies a proactive step in this direction. This consortium includes the 5 academic Alzheimer’s centers, the Dutch Alzheimer’s Society, the Young-Onset Dementia Knowledge Center and several healthcare organizations specialized in YOD. One of the objectives of this consortium is to develop a framework for person-centered post-diagnostic care immediately following the diagnosis for persons with YOD and their spouses at memory clinics. A holistic care strategy, embedding characteristics of the person with YOD, their spouses, and their spousal relationship, will be crucial toward the goal of successfully implementing a clinical framework for person-centered post-diagnostic care into memory clinics.

Bruinsma et al. (2020) present interesting quantitative data using a large sample size that demonstrate that the perceived quality of the spousal relationship in people with YOD deteriorates and that this decline is associated with specific characteristics of both the person with YOD and their spouse. Future research that examines how fluctuations in symptoms and characteristics of people with YOD, as well as their spouses, influence the quality of the relationship will help to gain a better understanding how the perceived quality of the spousal relationship in YOD changes over time, as well as identify factors that empower spouses of people with YOD to address those changes. These efforts will be crucial in developing a holistic framework for person-centered post-diagnostic care for all those living with YOD.