Influential factors of spousal relationship quality in couples living with dementia – A narrative synthesis systematic review

Overarching themes: The world of us, and the world outside of us

Twenty factors that influence relationship quality were identified, and these were grouped into six influence categories. Three of the categories have been grouped to the overarching theme: The world of us, as the factors in these categories occur within the dyadic world of the couple. Further, three influence categories were grouped to: The world outside of us, as these categories describe social factors that include family, friendship or community settings. Table 2 provides an overview of the overarching themes, influence categories and factors. The table also gives direct reference to the original articles that describe the factors. The references in bold font show studies concerning that specific factor in particular.

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Table 2.

Influence categories and factors.

Influence categories	Factors	Reference texts
THEME 1. The world of us
Influence category 1: Attitudes and strategies	1. Adaption to loss	Bielsten et al. (2018), Boylstein and Hayes (2012), Clark et al. (2019), Colquhoun et al. (2019), Davies et al. (2010), Merrick et al. (2016), Robinson et al. (2005), Swall et al. (2020), Simonelli et al. (2008)
	2. Coping and adjustment to the new situation	Bielsten et al. (2018), Boylstein and Hayes (2012), Clark et al. (2019), Colquhoun et al. (2019), Daniels at al. (2007), Davies et al. (2010), Gallagher and Beard (2020), Harris (2009), Hellström et al. (2005, 2007), Merrick et al. (2016), O'Shaughnessy et al., 2010, Robinson et al. (2005), Swall et al. (2020)
	3. Feelings and attitudes of commitment	Davies (2011), Harris (2009), Merrick et al. (2016), O'Shaughnessy et al., 2010, Shavit et al. (2019), Swall et al. (2020), Daley et al. (2017)
	4. Feelings and attitudes of reciprocity/mutual respect	Davies (2011), Gallagher and Beard (2020), Shavit et al. (2019)
	5. Humour and playfulness	Boylstein and Hayes (2012), Harris (2009), Hickman et al. (2020), Allan (2018), Baker et al. (2012)
Influence category 2: Behaviour and activities	6. Behavioural and psychological symptoms of dementia	Boylstein and Hayes (2012), Davies et al. (2010), Sanders and Power (2009), Bauer et al. (2001), Bruinsma et al. (2020), Clare et al. (2012), DeVugt et al. (2003), Garand et al. (2007), Simonelli et al. (2008), Stefánsdóttir et al., 2021
	7. Communication patterns	Boylstein and Hayes (2012), Bruinsma et al. (2020), Davies et al. (2010), Hellström et al. (2007), O'Shaughnessy et al., 2010, Roberto et al. (1998), Shavit et al., 2019, Williams (2015)
	8. Shared activities and sustaining common interests	Bielsten et al. (2018), Boylstein and Hayes (2012), Gallagher and Beard (2020), Gallagher and Beard (2020), Hellström et al. (2005), Vikström et al. (2008), Allan (2018), Baker et al. (2012), Bauer et al. (2001), Searson (2008)
	9. Attending couples counselling and music therapy programs	Auclair et al. (2009), Balfour (2014), Ingersoll-Dayton et al. (2013), Allan (2018), Baker et al. (2012)
Influence category 3: Emotional connectedness	10. Love	Bielsten et al. (2018), Boylstein and Hayes (2012), Clark et al. (2019), Colquhoun et al. (2019), Davies et al. (2010), Gallagher and Beard (2020), Harris (2009), Merrick et al. (2016), Sanders and Power (2009), Shavit et al. (2019), Swall et al. (2020)
	11. Sexual intimacy	Bielsten et al., (2018) Youell et al. (2015)
	12. Sense of couplehood, we-ness, us-identity	Bielsten et al. (2018), Davies (2011), Gallagher and Beard (2020), Harris (2009), Hellström et al. (2005, 2007), Merrick et al. (2016), Molyneaux et al. (2012), Swall et al. (2020), Daley et al. (2017)
	13. Sharing of memories, feelings, and future plans	Bielsten et al. (2018), Daniels at al. (2007), Gallagher and Beard (2020), Ingersoll-Dayton et al. (2013), Merrick et al. (2016), Molyneaux et al. (2012), Nilsson and Olaison (2019), O'Shaughnessy et al., 2010, Swall et al. (2020), Williams (2015), Allan (2018), Baker et al. (2012)
	14. Experiences of changing roles	Boylstein and Hayes (2012), Davies et al. (2010), Harris (2009), Hellström et al. (2005), Merrick et al. (2016), Molyneaux et al. (2012), O'Shaughnessy et al., 2010, Sanders and Power (2009), Seaman (2020), Stefánsdóttir et al., 2021 Vikström et al. (2008)
THEME 2. The world outside of us
Influence category 4: Activities and experiences outside the home	15. Self-managed leisure activities	Bielsten et al. (2018), Boylstein and Hayes (2012), Gallagher and Beard (2020), Sanders and Power (2009), Vikström et al. (2008)
	16. Organised activities and programs	Bielsten et al. (2018), Boylstein and Hayes (2012), Gallagher and Beard (2020), Harris (2009), Hellström et al. (2005), Vikström et al. (2008), Allan (2018), Baker et al. (2012)
Influence category 5: Social bahaviours and roles	17. Reactions to dementia symptoms from the world outside	Botsford et al. (2012), Boylstein and Hayes (2012), Shavit et al. (2019), Vikström et al. (2008) Bauer et al. (2001)
	18. Changing roles within family and friendship contexts	Bielsten et al. (2018), Gallagher and Beard (2020), Sherman and Boss (2007),
Influence category 6: Belonging and safety	19. Belonging to a group	Bielsten et al. (2018), Boylstein and Hayes (2012), Daniels at al. (2007), Harris (2009), Hellström et al. (2005), Allan (2018)
	20. Safe and unsafe spaces outside the home	Bielsten et al. (2018), Daniels at al. (2007), Gallagher and Beard (2020), Hellström et al. (2005), Vikström et al. (2008), Allan (2018)

In the following, each factor is described. These descriptions are based on step 4 of the narrative synthesis: Narrative descriptions of factors. The narrative descriptions have been shortened, and quotes from original articles have been added. The quotes are cited verbatim from the original texts, including formatting, brackets and other characters.

Influence category 1: Attitudes and strategies

Factor 1: Adaption to loss. To live with dementia often leads to a feeling of loss, and frustration for both individuals in the relationship. This may lead to a disruption to the quality of the relationship. Partners may experience feelings of helplessness and resentment towards their spouse with dementia. When couples share an attitude of facing the challenges of dementia together, through acceptance of the other, adaptation of one’s own patterns and reactions, and being open with each other, they may help themselves and each other with coping with the feeling of loss.

‘You adjust to it, I mean the abnormal has become normal (laughing) as you might say’. [Wife with dementia] (Robinson et al., 2005, p. 342)

Factor 2: Coping and adjustment to the new situation. Participants in several studies reported that taking 1 day or one moment at a time was a coping strategy for them. The synthesis indicated that actively sharing their common history through reminiscing and collaborative story-telling supported relationship quality.

People say to me ‘how on earth do you cope?’ People say to me ‘you cope so well’. I don’t know whether I sort of push it down, and. . . try not to think of what is coming, the future. . .. . .. And trying hard not to look too much at what happened in the past. And just cope with day-to-day things and not look too far ahead. That’s one thing I definitely try not to do. Is not look far ahead I know what’s coming, but. . . um I try to adapt. . . as it goes along. . . (O’Shaughnessey et al., 2010, p. 251)

Factor 3: Feelings and attitudes of commitment. The synthesis revealed that when couples shared a feeling of commitment, of being partners for life, this promotes resilience during challenging periods. Though living with dementia leads to feelings of loneliness for both members of the couple, the attitude of staying true to their commitment brings meaning to the relationship.

I married Mark, in sickness and in health and now he’s really sick, but it’s for life. (Sue) (Merrick et al., 2016, p. 39)

Factor 4: Feelings and attitudes of reciprocity/mutual respect. This factor is often related to the habits and patterns from the history of the couple, according to the included studies. Couples who express that respect and reciprocity has been central in their life together, often also report a high relationship quality when they live with dementia.

Reciprocity, or the ‘give and take’ in each couple’s marital relationship, was present despite one spouse’s dementia. Shared meaning was still experienced by both spouses, although relations of equal reciprocity were difficult to attain as the spouse with dementia was no longer able to reciprocate equally. This didn’t appear to be a problem. (Davies, 2011, p. 227)

Factor 5: To maintain a sense of humour and a playful attitude may offer a sense of coherence in the relationship, and it can increase positive emotions in the couple:

‘It [humour]’s a release, it’s breaking the frustration, the tension, the aggravation, the anger. . .’ (Dave). (Hickman et al., 2020, p. 1805)

Influence category 2: Behaviours and activities

Factor 6: Behavioural and psychological symptoms in the person with dementia. Dementia related personality changes, communication breakdown, and lack of expressed interest and affection towards each other, negatively impacts relationship quality in couples. Narratives suggest that when the spouse with dementia displays more severe behavioural and psychological symptoms of dementia, depression and apathy, lower relationship quality is experienced when compared with couples whose behaviours are milder in severity (Bruinsma et al., 2020; DeVugt et al., 2003; Garand et al., 2007).

Factor 7: Communication patterns. Miscommunication and repeated questions are verbal communication patterns that may stress both members of the couple, thereby negatively influencing relationship quality. Couples where the healthy spouse expresses affection, avoids conflict triggers, poses direct questions, formulates short succinct messages, and allows space for the spouse with dementia to respond, experience less stress and a more positive communication. While communication challenges may lead to an unsatisfactory emotional and sexual relationship, partners who actively address the needs of their spouse with dementia, experience enhanced closeness and intimacy. Conversely, couples where the healthy spouse ignores their spouse’s challenges and focuses on their own caregiver burden, report lower relationship quality and satisfaction.

Now, when I take the key, he starts swearing at me, starts cursing me, getting angry with me. “Where, where, where”… and I don’t know what he wants. “Where, where, where.” I say: “Take me by the hand, show me what you want.” But there is no one to talk to, no one to talk to. (Shavit et al., 2019, p. 18)

Factor 8: Shared activities and sustaining common interests. Being able to do things together in a meaningful way for both and to keep an active lifestyle on the couples’ own premise may enhance positive feelings.

Just being able to be together and enjoy and listen to something we love is a benefit. To share something is a good thing and this is still something we want to do and are able to do. … we also came to enjoy spending this time together. […] It was our common ground as such so we didn’t need words. (Baker et al., 2012, p. 14)

Factor 9: Attending couples’ counselling and music therapy programs. Four studies describe counselling or therapy programs which had a positive influence on the participating couples’ relationship quality. This is shown through reports of enhanced closeness between the two. A shared life stories program enhanced intimacy and meaningful couple interaction (Ingersoll-Dayton et al., 2013), while two music therapy programs created a safe space for common engagement and connection (Allan, 2018), and strengthened reciprocity and overall relationship quality (Baker et al., 2012).

Influence category 3: Emotional connectedness

Factor 10: Love. The concept of “being in love” and “loving each other” is highlighted in several of the included articles. Studies suggest that love seems to be a central experience of how couples maintain a positive relationship quality. Terms such as “love”, “closeness”, and “maintaining a bond” permeated the data analysed.

Interviewer: Do you have a good time?

Factor 11: Sexual intimacy. Experiences of physical and/or sexual intimacy may change within the couple as dementia progresses, thereby impacting relationship quality. Couples who are able to re-define intimacy to include activities and behaviours that transcend physical attraction and sex, may experience relational benefits. Conversely, sexuality and intimacy can challenge some couples when the two individuals’ sexual needs differ. When there are significant personality changes in the person with dementia, a healthy spouse may experience sexual intimacy as problematic suggesting it is like “[having] sex with a stranger” (Youell et al., 2015, p. 13).

Factor 12: Sense of couplehood, we-ness, us-identity. This concept is close to Love and Closeness. An important part of the sense of a “we” is safety: the experience of the relationship and the shared home as a “safe space”, as well as a feeling of closeness and enjoying to spend time together, moment by moment:

Woman looks at him saying: “Here we are spending good times together.” Man nodding and says: “yes, yes.” Woman looks at him saying: “Trying to live in the moment.” Man looks at the table nodding and says: “Right, right.” Woman looks at him saying: “Not in the past, not in the future, but only in the moment.” (Swall et al., 2020, p. 6)

Factor 13: Sharing of memories, feelings, and future plans. Such sharing includes reminiscing, the use of music or other activities to evoke memories, and being open to share feelings, dreams, fears and plans for the future.

[…] husband with memory loss read aloud the letter to his wife in which he had proposed to her. Afterwards he stated, “That probably is one of the best things I wrote.” His wife emphatically responded, “You are right” and then kissed him. (Ingersoll-Dayton et al., 2013, p. 9)

Memories and feelings can also negatively affect relationship quality. Shavit et al. (2019) describe couples with a turbulent past, in which living with dementia leads to further anger and resentfulness and a reluctance in the healthy spouse to provide necessary help for the spouse with dementia.

Factor 14: Experiences of changing roles. As the disease progresses, it is common for couples to experience role changes which may impact relationship quality. The most frequently reported role changes seems to be where the role of spouse transforms to be one of a caregiver, sometimes referred to as the spouse’s “nurse” or even “parent”. The change from spouse to care recipient, or patient, is also frequently described, however, almost exclusively from the healthy spouse’s perspective.

At my age, I don’t really want to take care of a child. And I have to, and that’s my frustration. And I know that will never change. I feel guilty about my thoughts and know that when she is gone I will regret every feeling of frustration I’ve had. (Sanders & Power, 2009, p. 49)

Role changes may lead to a poorer relationship quality because maintaining a sense of couplehood, closeness or intimacy is threatened when time, effort and energy is invested in caregiving. Conversely, the change in role of spouse to caregiver may also strengthen the healthy spouse’s capacity to cope with the situation, and further a renewed and adjusted relationship quality.

Influence category 4: Activities and experiences outside the home

Factor 15: Self-managed leisure activities. To engage in activities together, such as socialising with others, is a significant factor for maintaining a positive relationship. These activities include self-directed leisure activities that the couple have and continue to enjoy together, as well as organised groups or programs. Chosen self-managed activities should be based on the couple’s preferences, needs and possibilities, and often include socialising with family and friends.

Mrs. Williams explained that she tailored activities so they would not be too difficult for her husband. Instead, she focuses on the activities that her husband could actively participate in, “I don't think he could play cards. I don't think he could play games. That would be befuddled in there. So I just would not do that. That's all. But he can play golf and keep his score and all that” (Mrs. Williams, spouse). (Gallagher & Beard, 2020, p. 5)

Factor 16: Organised activities and programs. This factor includes support groups, activity centres for persons with dementia and their caregivers, couples’ conversation groups and group music therapy. Such activities may provide the facilitation, safety, and support couples living with dementia need and seek. Both activities directed towards people with dementia, and general activities, are described in the included literature.

It was amazing to see the participants come out of their shell as the weeks progressed and form bonds not only with each other but also reconnect with their loved ones through story and song. (Allan, 2018, p. 45)

Influence category 5: Social behaviours and roles

Factor 17: Reaction to dementia symptoms from the world outside. Behaviour changes in the spouse with dementia may negatively impact how the couple interacts when socialising with other people. Other people’s negative reactions to inappropriate or unusual behaviour, or the fear of such reactions, may cause embarrassment in one or both spouses, leading to social withdrawal. One study suggests that diminishing social skills lead to a decrease in relationship quality, though without significant results (Bauer et al., 2001). Two studies argue that the fear of reactions, and embarrassment, in the healthy spouse can be a cultural issue (Botsford et al., 2012; Shavit et al., 2019).

And then like last night, he was out on the floor dancing and I mean some people would have thought he was drunk and making a fool out of himself and on one hand it’s painful to see him, you know. It hurts me really bad to see him like that, kind of like making a spectacle of himself. (Boylstein & Hayes, 2012, p. 600)

Factor 18: Changing roles within family and friendship contexts. Family members or friends may not understand, or may feel uncomfortable with, the couple’s role changes. A consequence can be decreased social contact with the couple and thus an increase in the couple’s social isolation. This seems especially evident in late re-married couples, with children from earlier marriages (Sherman & Boss, 2007). In contrast, maintaining an already established role in social contexts can lead to increased self-esteem and social wellbeing for couples living with dementia.

“We’ve chosen to stop seeing a couple of friends. One was so overly helpful and wanted to “take care of” so much it became offensive. It’s sad, but we have to socialize with people who make us feel good”. (Bielsten et al., 2018, p. 20)

Influence category 6: Belonging and safety

Factor 19: Belonging to a group. For couples to feel they belong to a group or society, with a sense of being accepted of, and important to the others, may enhance the quality of the relationship. Social support received from others seems especially important to the healthy spouse, as social interaction may contribute to a hope for the future. Friends and family who help with practical tasks of daily living bring relief to the healthy spouse so they can invest time and energy to participate in positive activities. An active social life can lead to greater closeness and intimacy as the distinction between being with other people and being a couple alone reminds them of the importance of “us” (Harris, 2009).

In many respects ‘doing things together’, particularly with the church, provided the foundation for their relationship, and maintaining contact with the church was central to both Mrs and Mr Svensson’s conceptions of ‘who they are’. Indeed, for Mrs Svensson this was one of the things that she found most important in her life (Hellström et al., 2005, p. 16)

Factor 20: Safe and unsafe spaces outside the home. The feeling of being safe in the social arenas the couple frequents, influences the couple’s social engagement. Arenas where other people are aware of the couple’s situation, and share an inclusive attitude offer such safe spaces. If a social arena or group feels unsafe for one or both of them, it can cause distress and behavioural issues, with withdrawal and social isolation as a consequence for the couple.