Creating a duet: The Couples Life Story Approach in the United States and Japan

Original couples narrative project

Our interest in couples-oriented work was inspired by a cross-cultural research project in which several of the present authors from Japan and the United States were involved (Ingersoll-Dayton, Campbell, Kurokawa, & Saito, 1996). To understand more about marriages in later life in Japan and the United States, we used an open-ended interview format in which we asked older couples to tell us the story of their lives together. As interviewers, we met conjointly with each couple and listened to a historical account of their marriage from when they first met until the present time. These couples were not dealing with dementia, but their stories resulted in rich narratives revealing shared perspectives on their married lives.

Although these couples-oriented interviews were not designed as an intervention, we received feedback from our research participants about their therapeutic value. Couples told us how much they benefitted from having the opportunity to review their lives together. They also observed that it was especially meaningful to reminisce with an interested listener. In addition, they appreciated being able to share the tapes and transcripts that resulted from our interviews with their family members. Taken together, these observations from the research participants pointed to the potential benefits of an intervention for older couples that used a story-telling approach.

Literature review

Our interest in developing an intervention for couples was further inspired by the small but growing body of literature in the United States that focuses on dyadic approaches where one person has dementia. The interventions described in the Moon and Adams (2013) review article are group, psychoeducation, and skill-building dyadic approaches. The intervention we developed drew on two other dyadic models: a life review approach and a legacy therapy approach.

Using a structured life review approach, Haight et al. (2003) interviewed couples where one person had memory loss. Life Story Books were created for each member of the couple based on separate interviews with the caregiver and the person with memory loss. Haight and her colleagues (2003) found that caregivers experienced decreased feelings of burden while the individuals with memory loss evinced more positive moods following the life review.

Legacy therapy is a dyadic narrative approach for individuals receiving palliative care and their family caregivers (Allen, 2009; Allen, Hilgeman, Ege, Shuster, & Burgio, 2008). In this model, care recipients and caregivers work together with an interventionist on a mutually agreed upon project to evoke positive memories and to provide a pleasurable activity for the dyad.

We have combined these two approaches into a therapeutic model in which interventionists work jointly with both members of the couple. Rather than focusing on the deficits of the care recipient, we use a strengths perspective that highlights the couple’s relatedness, adaptability, and resilience over the years (McGovern, 2011). In so doing, our model attempts to address several issues salient to dementia care including the need for meaningful engagement, shared communication, and pleasurable activities.

Development of Couples Life Story Approach

Building upon this previous research, the American members of the team developed a preliminary protocol for an intervention that would involve both members of the dyad conjointly using a narrative approach. Members of the Japanese team visited the United States team to learn more about the intervention and to observe a couple as they were interviewed by an interventionist. During their visit, the Japanese team suggested revisions to the preliminary protocol. They suggested, for example, that the intervention should include questions that helped the couple to think about the future and the legacy that they would like to leave as a couple. Based on their suggestions, additional questions were included by the American team to help couples deepen and extend their narrative into the future (e.g. What are your wishes and hopes for the days ahead? What would you like people to remember about you and your relationship?) Also, following suggestions made by members of the Japanese team about the Couples Life Story Book which included the couple’s narrative, the American team added several blank pages. These blank pages were included to encourage the couple to continue to add to their narrative when the intervention ended. Subsequently, the Japanese team began to work in Japan using the Couples Life Story Approach. Over time, the members of the team communicated with each other to share how the intervention was working with the participating couples and presented their findings together at professional meetings. We continue to communicate with each other via e-mail on a regular basis, and meet periodically to share clinical observations.

Couples Life Story Approach model

The model that has emerged from this cross-cultural fertilization process works conjointly with both members of the dyad to optimize the opportunity for partners to engage in a meaningful way with one another (Ingersoll-Dayton et al., 2013; Scherrer, Ingersoll-Dayton, & Spencer, 2014). A key feature of our approach is to highlight the strengths rather than the deficits of couples (Allen et al., 2008; McGovern, 2011). We use life review techniques, as have Haight and colleagues (2003), but our approach differs in that we work conjointly with both partners to help them reminisce together. By asking couples to tell the story of their lives together, we encourage them to highlight their strengths, facilitate improved communication, and help them to emphasize their shared identity as a couple.

The Couples Life Story Approach occurs over 5 weekly sessions that are conducted with both the person with dementia and his/her spouse or partner. The practitioner generally meets the couple in their home, a care facility, or the home of a family member. The focus of the sessions is on helping couples to review their life together and to highlight people and experiences that have been particularly important to them. While the couple reminisces, the practitioner tape records and/or takes notes so that their stories and reflections can be included in a Life Story Book.

Each session examines a different time period in the life of the couple starting with when they first met. Between sessions, the couple finds photographs and other kinds of mementoes (e.g. letters) that reflect aspects of their life story for each time period. These mementoes are then incorporated into the Life Story Book by the practitioner along with captions or stories that the couple provides. During the final session, the couple reads this book together with the practitioner and discusses ways in which they might continue to use the book over time.

Recruitment of participants

The American team contacted Alzheimer’s Association chapters, organizations involved in conducting Alzheimer’s disease research, caregiver groups, churches, and geriatric clinics (e.g. doctors, nurses, and social workers). They provided these organizations with a letter of invitation to potential couples and brochures that described the intervention. They also distributed flyers around the community (e.g. libraries and grocery stores). Interested couples then contacted the researchers. Thus couples were essentially self-referred such that those who were not interested in this approach screened themselves out of the intervention.

In Japan, recruitment occurred mainly via referrals from care managers (a professional in the LTCI system who visits monthly and co-ordinates care). Some of the care managers who made referrals were employed by the home care agencies which support the day care centers attended by the participants in our project. For the Japanese team, the care managers served as intermediaries by identifying potential participants and then encouraging them to become involved in the project. Thus several couples referred to the Japanese team were those who were seen as needing help and who would benefit from the intervention.

Description of participants

In the United States, we have worked with 40 individuals (i.e. 20 couples in which one person had cognitive functioning problems and the other was their spouse or partner). Among the care recipients, 70% were men and 30% were women. Their Mini Mental Status scores (an indicator of cognitive functioning) averaged 23.5 and ranged from 16 to 27. The American participants had mild to moderate dementia. On average, they were 74 years old and well educated (65% were college graduates and above). Among the caregiving spouses/partners, 35% were men and 65% were women. On average, these spouses were 72.2 years old. Like the care recipients, they were well educated (55% were college graduates and above). All the couples were white and most were heterosexual (95%). One couple was in a same-sex relationship. All but two of the couples (who were residents in continuing care retirement communities) lived in their own homes. With regard to their economic situation, 30% of the caregivers indicated that they were experiencing financial hardship.

In Japan, we have worked with 18 individuals (i.e. 9 couples). Among the care recipients, 78% were men and 22% were women. Their Mini Mental Status scores averaged 13.9 and ranged from 5 to 26, which were considerably lower than that of the American sample. The mean age of the care recipients was 77.4 years and 44% were college graduates. Among their caregiving spouses, 22% were men and 78% were women and the average age of these spouses was 76.4 years. Of these caregivers, 33% were college graduates although many of the caregivers and care recipients had attended some post-secondary school. All couples were heterosexual but, as is typical in Japan, there were two distinct paths to marriage. The traditional way was to have their marriage arranged by someone else and a second way was to choose their own partner. More of the couples (56%) had arranged marriages, while the rest of the couples (44%) had marriages based on a “love match.” One couple lived in a nursing home; the others in their own homes. In relation to their economic situation, 44% of the caregivers noted that they had financial hardship.

Partner affirmation

Because our model encouraged each partner to participate in telling the story of their life together, there were several opportunities for both the person with dementia as well as the caregiving partner to highlight each other’s strengths.

An American couple: Mr Young and his wife were interviewed in their apartment. He often talked about the early years of their marriage, but, due to his advancing Alzheimer’s disease, seemed to have forgotten most of his 40 year career as a journalist. His wife, an artist, was anxious to spotlight Mr Young’s career accomplishments in their Life Story Book. Each week she brought articles he had written or that were written about him that triggered memories for him. At the same time, Mr Young took great pride in showing the practitioner each of his wife’s oil paintings that covered the walls of their apartment. A favorite painting showed him working in the garden. He praised this painting while he reminisced about his love of gardening. Mrs Young glowed with pleasure as he lauded her skills as a painter.

A Japanese couple: Mr Nakamura had been the director of a large auto company. With a Mini Mental Status score of 5, he was one of the most cognitively impaired participants in our study. Although he was unable to articulate his thoughts and spoke in short bursts, encouraged by his wife, he did respond to photos of the cars built by his company. His wife, who had also had a prominent career, complimented her husband on his support. As the wife of a chief executive, she was expected to devote herself to his career but Mr Nakamura supported his wife’s career and told the practitioner, “I didn’t think she needed to stand that.” She said affectionately of him, “He is quite a jewel.” He stroked her shoulder and said, “I am satisfied with her enough. I want to live with her.” His declaration was a strong affirmation of love, particularly for a Japanese man of his generation.

Improved engagement

American and Japanese couples found that their involvement in the Couples Life Story Approach provided them with the opportunity to relate to each other in more significant ways. This meaningful engagement extended to others in their social network as they shared the completed Life Story Book with them.

An American couple: Mrs Brown, who had Alzheimer’s disease, lived with her husband in the home of their son. Mrs Brown was extremely talkative, in contrast to her husband who was a very quiet man. She frequently talked about her father and how important he had been to her while overlooking the daily contributions made by her husband to her care. Integrating pictures from their early years that highlighted their shared interest in music served to remind her of her life with her husband. At the final session, Mrs Brown told us how wonderful it was to be married to him and, warmly patting his knee, declared, “This is a good man.” Several weeks later, her young granddaughter accompanied her to the adult day program that she attended. They brought along the Life Story Book. While Mrs Brown beamed, her granddaughter showed the book to the day program members and read them the stories about the life of her grandparents.

A Japanese couple: Mr Sato, a former newspaper reporter, had dementia. He hesitated to talk at first and could not remember events in his life until prompted by his wife. However, when he and his wife looked at photos from the years when he served as a reporter in the United States he became animated and spoke about how much he enjoyed that period of his life. Mrs Sato told us that her husband’s mood was good and his mind clear after each interview. She was surprised and very happy to hear him laughing and telling jokes as he used to do years before. When we brought the Life Story Book to show the couple, Mr Sato was moved to tears as he read it and remarked on how cute his little daughter was. Mrs Sato wrote to us that “we read the book together and felt nostalgia and healing as we read it.” Mr Sato also took the book to his day care center to share with the staff and his friends.

Handling losses

While most of the focus of our interviews with the participants centered on pleasant memories, there were also times during which the couple reminisced about difficult times, such as the death of family members and friends. When couples discussed these kinds of losses, the practitioners helped them to identify how they had coped and how they would like to include in their Life Story Book these individuals who had died.

An American couple: Mrs Jones had Alzheimer’s disease. Shortly after we began the interview, she began talking about her son who had died as an infant and, as she reminisced about his death, she began to cry. Though the loss had occurred over 40 years earlier, it was still painful to her. When the practitioner helped Mrs Jones and her husband to think about particularly meaningful times in their life, she asked the couple if they wanted to include mementoes of this son. Both Mr and Mrs Jones quickly responded that, though the loss of their child was still painful, they wanted to remember him and give him a prominent place in their Life Story Book. They decided to include his picture, his birth announcement, and a poem. At the end of the intervention, the husband suggested that as they looked through their Life Story Book in the future, they could decide each time how much to focus on the page about their son’s death.

A Japanese couple: Mrs Tanaka had mild dementia. She talked hesitantly at first but as the sessions progressed, she became an active participant, often recalling past events more than her husband did. Mr and Mrs Tanaka had lived with Mr Tanaka’s parents for decades. One day Mr Tanaka’s father went out for a walk, wearing geta, traditional Japanese wooden sandals. One of his sandals caught in the train tracks near their house just as a train was approaching. When the train came, it hit the old man and he died at once. During the interviews Mrs Tanaka kept saying that she was so sorry about the accident and felt it was her fault because she should have gone with her father-in-law. Her husband said, “It was not your fault, I am grateful and happy that they could live with us and we could look after them until they died.” His reassurance seemed to help relieve some of her guilt, though she remained sad about the event.

Fullness of life as a couple

The Couples Life Story Approach highlighted the richness of the couple’s life together. Several couples talked about how they were more aware of the positive aspects of their relationship that continued over time, even when one partner had memory impairment.

An American couple: Mr Smith had mild cognitive impairment. Some activities of daily living were becoming increasingly challenging and he had recently given up driving. Nevertheless, he and his wife continued to enjoy their life together. They especially loved telling stories from their past and took turns by picking up the threads of each story. In one instance, Mrs Smith began the story of their daughter’s marriage that started with an unexpected pregnancy. Mr Smith continued the story by relating how their own marriage had grown and deepened over time. He told the interviewer that he and his wife had recently celebrated their anniversary with their daughter and son-in-law by traveling to Florida. Since Mr Smith was no longer able to drive, the younger couple served as chauffeurs as well as companions. In this instance, rather than focusing on the limitations of the husband’s cognitive impairment, the couple used this story to highlight the joy they experienced when spending time with their daughter and son-in-law.

A Japanese couple: Before he had dementia, Mr Sakai worked as an editor in a publishing company. At our first interview, Mr Sakai rushed upstairs and brought down the children’s book he had written earlier in his career. He and his wife were both very proud of this book. When the practitioners admired the striking picture of Pierrot the clown, Mr and Mrs Sakai and the practitioners decided to use the illustration on the cover of their Life Story Book, representing one of the notable achievements of Mr Sakai’s life. Mrs Sakai expressed surprise that her husband remembered so many things about his work. She also talked about her own life in some detail and when asked, at the end of the intervention to write about her reactions, she wrote, “I felt the volume of my life, not only of my present being but also of all my past life, this time and that time, my continuing life. I think my life is an ordinary life but I could feel that it had a certain weight and history which made me happy.” The impact of the intervention extended beyond the couple to include the couple’s daughter. After reading their Life Story Book, she wrote, “Looking at the book of my parents’ life, their history might not have been dramatic but it was a happy life. Thanks to my parents the happiness is transferred to us and I thank them for raising us to be happy.”

Accommodating different methods of narration

Couples tell the story of their lives together in different ways. The narrative approach taken in the United States has been to ask questions that facilitate a chronological telling of the couple’s story. The American team has developed a series of specific questions within each of three time periods (i.e. early, middle, and recent years). While this approach has worked well for many couples, we have also discovered that some couples do not think about their life together in a chronological way. The Japan team has developed a generic map that allows couples to move back and forth through time. By providing a picture of a general time period (e.g. the early years of marriage), the couple’s narration can easily go back and forth within this time period as they choose. This also allows spouses to begin talking about topics with which they are more comfortable (e.g. work) and then later moving to other topics (e.g. family relationships). To illustrate, the story of the father-in-law whose sandal got caught in the train track was discussed out of chronological sequence and was told much later in the narrative process. Possibly, the wife was only comfortable in discussing this story after developing a relationship with the interventionists.

The couples’ communication patterns (e.g. interrupting, correcting, and testing) can sometimes interfere with their ability to collaborate on the telling of their story. Both teams tried to address such problematic patterns. The American team spearheaded a more direct approach which involved presenting and discussing communication tips at the beginning of each weekly session. These tips provided some education about memory loss, the importance of stories, and suggestions for good communication. Perhaps more importantly, they often provided the impetus for a discussion about how to handle difficult moments in communicating and also offered couples the opportunity to affirm each other. The Japanese team decided not to incorporate the use of communication tips in a direct way but instead incorporated them indirectly by modeling how to include the person with memory loss into the conversation. This decision was motivated, in part, by the feelings of some interventionists that lecturing older people about their communication was disrespectful. As we move forward in the process of cross-fertilization, the American team is incorporating more indirect ways (e.g. modeling) of addressing communication and the Japanese team is considering more direct ways of teaching communication skills that will assist couples in the telling of their story.

Disseminating the narrative

The Life Story Book that resulted from this approach has had a similar positive impact on the American and Japanese couples in that it allows them to relive their story together and to share it with others. The book itself becomes a legacy to be handed down rather than a pile of photographs to sort through. It provides coherence to their story for others to understand and admire. Our expectation is that this book will extend the impact of the Couples Life Story Approach by encouraging couples to continue to reflect on their lives together as they review the book with each other and with others over time. By including several blank pages at the end of each book, we are indicating that they have a future, that the present is not the end of their story.

We have been experimenting with different ways of constructing the Life Story Book. The American team has constructed it as a traditional photo album. Within the album are photos and other mementoes with large font captions as well as stories about events that were significant for the couple. The Japanese team has developed an electronic version so that they can make multiple copies of each couple’s book. We originally thought that this method of disseminating couples’ stories was particularly relevant to the Japanese couples because extended family relationships as well as relationships with day care staff were of central importance in their lives. However, we have discovered that the American couples are also very interested in sharing their stories with family, friends, and professionals; thus, the American team is also considering constructing the Life Story Books electronically to facilitate their ability to make multiple copies.

Cross-cultural applicability of intervention

Although conducted somewhat differently in the United States and Japan, the Couples Life Story Approach had a number of common benefits for couples in both countries. As we analyzed their experiences, we were struck by the similar themes that emerged across couples in the two countries. In particular, in both countries the approach highlighted the couple’s partnership, affirmed their strengths, enhanced their engagement with each other and their networks, and helped them cope with their losses.

Not only is this a strengths-based approach (McGovern, 2011), but the interaction helps each couple move beyond the current situation and look at it in the context of their whole shared life together, recognizing the individuality and fullness of their lives, transcending some of the roles they have assumed because of the illness. The intervention addresses them as a couple working as partners in the context of a long partnership, instead of limiting them to the roles of caregiver and care receiver. It helps them to integrate their experiences, remember high points and low points and, most importantly, relive them together. It solidifies their relationship and their identity as a couple with a long history.

We found that in both the United States and Japan, this dyadic approach brought the person with dementia into the conversation. People with dementia, or even early memory loss, are often excluded from this kind of conversation or talked to in a condescending manner (Hamaguchi, 2011). The modeling and encouragement to talk that the interventionists gave to the person with dementia helped the partner learn ways of encouraging their spouse with memory loss to participate. This approach helped to normalize the dementia experience and move away from the perception of the person with dementia as a victim.

Taken together, our experiences with the Couples Life Story Approach suggest that it is a promising dyadic model that can be easily translated across cultures. The American and Japanese practitioners found the intervention easy to implement and adaptable to their personal styles as well. While the kinds of couples seen in Japan and the United States have been somewhat different, these variations have helped us feel confident that the Couples Life Story Approach is applicable to many kinds of couples. We welcome other practitioners working in dementia care to use and adapt the Couples Life Story Approach to their own cultural contexts.