The value of “us”—Expressions of togetherness in couples where one spouse has dementia

Abstract Background Living with dementia involves both illness and health, and self‐care and care from others. As most persons with dementia live in their own homes, dementia affects not only the person with the disease, but also family, commonly the partner. Research shows that spousal carers feel as though they are losing their partners since they can no longer share thoughts, feelings and experiences as a couple. Aim The aim of the study was to describe the sense of togetherness of the spouses when one spouse has dementia. Method The sample consists of 18 recorded conversations between 15 persons with dementia and their spouses. The filmed conversations were transcribed verbatim and then analysed using qualitative content analysis. Findings One overarching theme arose: Dementia preserved and challenged the value of “us.” It can be challenging for a couple in which one partner has dementia to preserve a sense of togetherness and to have the relationship they wish for. Conclusion Based on our results, we suggest that practitioners should help couples to strengthen their bond as a couple so as to maintain a sense of well‐being. Future studies should examine couplehood under differing conditions, such as long‐ versus short‐term relationships. Prior relationship quality may also be a factor that influences the sense of couplehood following a serious health challenge, such as dementia. Implication for practice When spouses were able to live together, their relationship was enriched at many levels. Their love for each other strengthened them as a unit – as an “us” – where togetherness seemed to be strong. Future studies need to examine whether the sense of couplehood varies depending on the length of the relationship (i.e., a relationship of many years or a relatively new relationship).


| BACKG ROU N D
According to the World Health Organization (WHO), nearly 10 million people will develop dementia every year worldwide, and the current number of 50 million people diagnosed with dementia is expected to triple to 152 million people in the next 30 years (WHO, 2017). Dementia is associated with an extensive range of disabilities such as memory loss, communication problems, disorientation and behavioural symptoms such as resistance and aggression. As a result, it is the leading cause of dependency in everyday living with needs increasing as the disease progresses (Alzheimer's Association, 2018;Alzheimer's Disease International, 2013). Eventually, this leads to the need for 24-hr supervision (Cerejeira, Lagarto, & Mukaetova-Ladinska, 2012;Haibo et al., 2013;Rockwood et al., 2015). These extensive care needs burden the healthcare system and subsequently the economy (Allergi et al., 2007;Hugo & Ganguli, 2014;Schaller, Mauskopf, Kriza, Wahlster, & Kolominsky-Rabas, 2015).
Living with dementia involves both illness and health, and selfcare and care from others. At times, people with dementia act independently, but at other times, they may not have the ability to recognise their shortcomings, for example managing their personal hygiene (Emery Trindade, Santos, Lacerda, Johannessen, & Nascimento Dourado, 2018;Kitwood, 1997). Research shows that living with dementia induces feelings of powerlessness over one's life, uncertainty in an unfamiliar world (Emery Trindade et al., 2018) and a desire to be included, supported, appreciated and respected (Tranvåg, Petersen, & Nåden, 2013). Hedman, Hellström, Ternestedt, Hansebo, and Norberg (2014) stated that to preserve the person's sense of self is to preserve a part of his/her identity. McCormack and McCance (2017) describe personhood as the most important component when practicing person-centred care. Personhood includes a sense of self as a human, with feelings and emotions, desires and thoughts. In addition, to exist in relations to others, to be a social being, to be recognised and respected. Edvardsson, Winblad, and Sandman (2008) describe person-centred care as when the lived experience of the person with dementia, including the person's uniqueness and worth, is included in the caring process.
As most persons with dementia live at home (Ludecke et al., 2018;World Alzheimer Report, 2015), dementia affects not only the person with the disease, but also the family, commonly the partner (Johannessen, Helvik, Engedal, & Thorsen, 2017;Liu et al., 2017;Wadham, Simpson, Rust, & Murray, 2016). Research shows that spousal carers feel they are losing their partners due to an inability to share thoughts, feelings and experiences as a couple (Ask et al., 2014;Pozzebon, Douglas, & Ames, 2016). Further, they find themselves in stressful situations and perceive themselves to have a lower quality of life than the person with dementia (Ask et al., 2014;Wadham et al., 2016). The marriage is often strained, and carers feel trapped and lonely in the relationship, with little time for themselves (La Fontaine & Oyebode, 2014). However, Hellstrom, Nolan and Lundh (2005) and Merrick, Camic, and O'Shaughnessy (2016) found that both the spousal carer and the person with dementia are motivated to maintain their "couplehood" (Hellstrom et al., 2005;Merrick et al., 2016). The concept "couplehood" was first described by Hellstrom et al. (2005) and was formulated from the definition of personhood first described by Kitwood (1997). The meaning of couplehood suggests that couples affected by dementia should be viewed as a unit rather than two separate individuals. Further, strategies to preserve and maintain their relationship should be developed based on their sense of couplehood: for example, promoting being and doing things together (Hellstrom, Nolan, & Lundh, 2007). Bielsten and Hellstrom (2017a, What does this research add to existing knowledge in gerontology?
• The study shows how couples where one partner has dementia may be strengthened by their history together as a couple.
• The study shows that the couples' conversations pointed to the fact that their relationship was full of rewarding experiences that they managed to have together despite the dementia.
• The study shows that couples who lived together felt close and that life had meaning because they were experiencing the challenge of dementia together.
What are the implications of this new knowledge for nursing care with older people?
• Nurse can encourage spouses who live together to share memories and experiences which could benefit their relationship despite dementia.
• For a more person-centred perspective, nurses could advantageously include the partner when planning care.
• At the organisational level, couples-focused care can be implemented.
How could the findings be used to influence policy or practice or research or education?
• As the majority of research focuses on the negative impacts of dementia on couples and on impairments because of dementia, these findings contribute to understanding the possibility of rewarding relationships despite dementia.
• Future research needs to examine whether the sense of couplehood varies depending on the length of the relationship (i.e., a relationship of many years or a relatively new relationship).
• Nurses can be taught to be aware that prior relationship quality may also be a factor influencing the sense of couplehood that follows a serious health challenge such as dementia.
• Nurses who care for couples living with dementia need to learn that spouses can experience love and togetherness that may influence the care relation. 2017b) and Merrick et al. (2016) suggested strategies for maintaining couplehood to include engagement in the relationship and co-activities. Daley, O'Connor, Shirk, and Beard (2017) wrote that carers who viewed their relation in terms of "we/us" instead of "I/me" experienced their situation as being less demanding, they were more satisfied in their relationship, and they perceived more mutual compassion in the relationship. Hernandez, Spencer, Ingersoll-Dayton, Faber, and Ewert (2017), as well as Hellstrom et al. (2005), suggested the importance of doing things both together and separately so that both the spouses and the persons with dementia can preserve a sense of self. Also, preserved couplehood makes it easier to work through problems together, to move on and to let go (Bielsten & Hellstrom, 2017b;Daley et al., 2017;Hellstrom et al., 2007). Wadham et al. (2016) described the importance of decade-long relationships as being a basis for sustaining couplehood during challenging times. Williams and colleagues (Williams, 2015;Williams, Newman, & Hammar, 2017) stated the importance of couples being able to engage in emotional communication in order to sustain their relationship. They developed a home-based intervention-Caring About Relationships and Emotions (CARE)-to improve communication and to support the relationship. In a study by Williams et al. (2017), communication improved for both the spousal caregiver and the partner with dementia after they took part in the 10-week CARE intervention.
Life together as a couple when one spouse has dementia is described in the literature as being primarily one of frustration, isolation and separation. There is a gap in the literature regarding couples' sense of togetherness, and their living as a unit rather than two separate individuals, and being and doing things together (Balfour, 2014;La Fontaine & Oyebode, 2014).
The aim of the study was to describe the sense of togetherness of the spouses when one spouse has dementia.

| Design
This was a secondary data analysis of existing data from a study of the effects of a 10-week, dyadic, home-based communication intervention on verbal and non-verbal outcomes in couples in which one individual was affected by Alzheimer's disease or a related dementia.
The researcher instructed 15 spousal carers to be open and to avoid correcting, condescending or arguing with their spouses. Further, CGs were taught to use clear, succinct and respectful communication, and to avoid testing their partner's memory. The persons with dementia had the opportunity to practice conversation with a member of the research team who was trained in communication deficits associated with dementia as well as the intervention. After the pre-and post-test visits and after each of the 10 weekly intervention sessions, couples were asked to engage in a 10-min conversation on a topic of their choice. Conversations were recorded by the researcher. After setting up a video recorder on a tripod, the researcher left the room.
After 10 min, the researcher returned and turned off the recorder. At a later time, recorded conversations were transcribed. For this study, a qualitative analysis of transcribed conversations was conducted to increase understanding of the spousal carers' sense of togetherness based on their verbal interactions with their partners with dementia.

| Sample and settings
Couples were recruited for the parent study from attendees at a memory centre day programme in south Florida in the United States.
The sample for this study consisted of eighteen recorded conversations selected from conversations based on the substance of verbal communication between the person with dementia and the spouse. For example, conversations where the person with dementia was too tired or did not interact were not included in the analysis.
Participants were White. The average age for carers was 77 and 80 for spouses. Most couples had long-term marriages with an average of 47 years, were middle-income and generally well-educated.
Most of the carers (68.8%) reported that they performed the role of caregiver for an average of 4 years. Severity of dementia for affected spouses was moderate (M = 16.8, standard deviation = 7.4) as measured by the Mini-Mental State Exam (Folstein, Folstein, & McHugh, 1975).

| Analysis
The filmed interactions between the person with dementia and spousal carer were transcribed verbatim including verbal (speech) and non-verbal communication (body language, facial expressions) and then analysed using qualitative content analysis as described by Graneheim and Lundman (2004). To get a true sense of the entire text, each transcript was read as a whole, and then, the text was categorised into meaning units that included sentences and phrases related to the aim of the study. The meaning units were then condensed and abstracted into codes (Table 1). Events, expressions and phenomena (verbal and non-verbal) that had connection to the aim of the study became visible in codes that emerged from the text. The steps in the analysis provided opportunities to move back and forth between the different levels of the analysis, which was helpful in the structuring of the text. The codes were then compared to check for similarities and differences and then further abstracted into two themes, each with two sub-themes and finally one overarching theme that encompassed the themes ( Table 2). The overarching theme, theme and the sub-themes represented the latent content of the text on an interpretive level.

| Ethical considerations
The study was approved by the University Institutional Review Board (IRB) at Florida Atlantic University. For the parent study, proxy consent was obtained from the participants' spouses, and assent was sought in all contact with the participants.

| FINDING S
The findings resulted in one overarching theme Dementia preserved and challenged the value of "us," which in turn were developed into two themes and four sub-themes (Table 2).

| Dementia preserved and challenged the value of "us"
When one partner has dementia, it can be challenging for a couple to preserve a sense of togetherness and to have the relationship they wish for. In many situations in this study, they managed to preserve what had been "us" and their feelings as "before." In other situations, they failed to be "us" and struggled to find the feelings of security that come with "us." "Us" is the link that keeps the couple together and that keeps them functioning in everyday life.

| Their love for each other supported togetherness
The theme Their love for each other supported togetherness was built upon the sub-themes Strengthened in their love for each other when together and Altruistic in their support for their spouses. It focused on the good things in life, on functioning together despite the memory loss of one spouse and on supporting the person with dementia despite the spouse's own wishes or needs. When the spouses were together and doing valuable things as a couple, they found strength in their relationship.

| Strengthened in their love for each other when together
Spousal carers often sought confirmation from their spouses that they-the partners with dementia-felt they were receiving the care they needed and that the love the spousal carer gave was enough to provide the person with dementia with a sense of safety and security. Further, the spousal carer helped the spouse with dementia to remember when the need arose and when they supported each other.
In some contexts, the person with dementia needed to hear that everything was fine despite memory-related problems.
Some spouses were deeply committed to ensuring that their loved one had the best in life and therefore adapted any situation so that their spouses' needs or wishes could be fulfilled. The spousal carer used endearments such as "sweetheart," "angle" and "my love" to demonstrate how much the carer appreciated the spouse's love despite changes in functional abilities due to the disease.

| Altruistic in their support for the spouse
By questioning and reassuring the person that they would have everything they needed and wished for in the current situation, and by prioritising the loved ones' needs, they strengthened their relationship.

| Taking the good with the bad
The theme "Taking the good with the bad" encompassed the subthemes Frustrated existence and Life is a blessing. Carers acknowledged that life's blessings and frustrating moments fluctuated just as they do in everyone's lives.

| Frustrated existence
Their daily lives together consisted of enriching elements but also frustrating situations that affected both the person with dementia and the spouse, but which they often managed to accept and live with.

| Life is a blessing
This sub-theme focused on life's blessings and on acknowledging life-enriching experiences when the situation was frustrating for both spouses and challenged their togetherness. To be able to function together as a couple in everyday life was seen as a blessing even when one spouse had dementia. Couples were able to value the good things in life, such as support from friends and relatives, and the care the couples received from those around them.
Being able to live in the moment with each other supported these perceptions.
Woman (carer). The couple is sitting on either side of a Spouses' conversations about life's blessings could also include a mixture of blessings and challenges, but often there was an accepting attitude towards life in general. Some spouses found their communication with each other to be the most important aspect of their relationship.

| D ISCUSS I ON
The results showed that couples where one person has dementia found strength in each other and in their commitment to their relationship. Their conversations with each other pointed to the fact that their relationship was full of rewarding experiences that they managed to have together despite the dementia. Memories were about family and friends as well as trips that they had taken. The fact they lived together brought them close, despite the challenges that then came with everyday life. At the same time, life had meaning because of the fact they were experiencing it together. According to Wadham et al. (2016), it was important for couples to maintain a shared identity of "us and we" so that they could continue to feel a sense of togetherness-of being "one"-when one spouse was affected by dementia. The present study shows a similar description of spouses' lives together with the value of "us" strengthened as a result of everyday experiences with the ups and downs related to dementia. Hernandez et al. (2017) also found that both parties in the relationship experienced a sense of unified identity despite the effects of dementia-related memory loss. These findings are consistent with Hellstrom et al.'s (2005) description of couplehood. Merrick et al. (2016) further stated the importance of upholding couplehood. Hellstrom (2017a, 2017b), together with Han and Radel (2016) and Riley, Evans, and Oyebode (2018), emphasised the importance of strategies based on dedication to the relation as well as to activities experienced together. This was also evident in our results when the couples talked about memories. The sense of couplehood-the "we/us" notion as Daley et al. (2017) describe itresulted in the spousal carer finding the care for his/her partner to be less demanding (Daley et al., 2017). such, there were no short-term relationships. In the future, the phenomenon of couplehood following a dementia diagnosis in a shortterm relationship warrants further study. We suggest, based on our results and in line with Hernandez et al. (2017), that practitioners should help couples to strengthen their bond so as to maintain a sense of well-being and to carefully assess the well-being of couples whose relationship is relatively new at the time one partner is diagnosed with dementia. A way of doing this might be to use the CARE intervention on emotional communication as described by Williams et al. (2017) son-centredness between couples who live together may be deeper than ever and could mean that in good relationships the care from a spouse is optimally person-centred.  (2000) state that the participants usually acclimate to the presence of the video camera and start to behave as though they are not being filmed.

| LI M ITATI O N S
Our perceptions were that the spouses often had trouble finding a subject to talk about in the beginning, but once the conversation began to flow, they did not seem to notice the camera.

| CON CLUS I ON AND IMPLIC ATI ON FOR FUTURE RE S E ARCH
When spouses were able to live together, their relationship was enriched at many levels. Their love for each other strengthened them as a unit-as an "us"-where togetherness seemed to be strong.
There were also times when each spouse might suffer in a different way depending on the situation. Future studies need to examine whether the sense of couplehood varies depending on the length of the relationship (i.e., a relationship of many years or a relatively new relationship). Prior relationship quality may also be a factor influencing the sense of couplehood that follows a serious health challenge, such as dementia. Variations in environment could also affect the relationship between couples after the onset of dementia. The degree of family and community support, economic resources and carers' prior health may influence their ability to create a sense of "we/us." A future analysis of the recorded conversations could focus on the disabling communication, which is interesting and important as well.

CO N FLI C T O F I NTE R E S T
The authors declare no conflict of interest.