was right for the person with dementia, but through conversation with each other they found consensus. At the same time, the quotes show that FamHC made it clear for the family that the person with dementia and family members did not necessarily have the same needs, wishes, or perceptions of the situation.
5.3. Involving the Relative with Dementia in Family Health Conversations
The participants expressed different concerns about involving the person with dementia in the conversations. Some of the participants tried the conversations both with and without the relative with dementia and therefore had different experiences. Some families spoke about involving their relative with dementia, which might feel natural and be successful, but could also be experienced as negative and burdening, especially for the person with dementia.
5.3.1. When Involvement Is Natural and Successful
In some participating families it was natural that their relative with dementia was involved in FamHC, and members of the family were able to speak freely about their feelings and their experiences of having dementia in the family. They experienced it as positive and felt it was a relief to share thoughts, joy, and worries together with the person with dementia. A participant described that FamHC helped resolve some conflicts in the family that they had been stuck on: “The FamHC resulted in us becoming aware about what father’s wishes actually were. It surprised me because I didn’t know that it was so deeply rooted in him” (son, 54, family 7). This shows that FamHC created a situation where important feelings and desires could be verbalised by both the family member with dementia and the family.
5.3.2. When Involvement Is Marked by Concerns
In other families, involving the person with dementia in FamHC was experienced as negative and burdensome to the family. Participants expressed a need to reach an agreement on how the situation in the family could be handled in the best way. There were situations where involving the person with dementia in FamHC was tried without success. A participant described:
“We tried to have a conversation with dad, but he couldn’t follow and quickly left the conversation. It was a shame to try to keep him there. He went out and made coffee came in again and asked us when we were leaving?” (son, 60, family 5).
The family therefore chose to end the conversation and made a new appointment with the dementia consultant that did not involve their father.
The participants wanted to protect the relative from being exposed and some felt that involving the relative with dementia was a risk. One son of a mother with dementia reported that he would rather have avoided involving the parent with dementia. He said:
“I am very much in doubt about how much she understood, it’s a mystery to figure out. Her answers during the conversations were totally off—I don’t think that she can remember it an hour afterwards (shaking his head and pausing, hiding that he was crying)” (son, 37, family 6).
This shows that family members worried about the conversation exposing the relative with dementia’s insufficiency, rather than being helpful to the family. Another participant also described how the family felt that they left with more frustration than before the FamHC. When this happened, the family needed a new FamHC that did not involve the person with dementia, to allow them to process their experiences and acknowledge that the consequences of dementia were so apparent.
It also was difficult to successfully carry out FamHC when the person with dementia did not have insight into their disease. A participant expressed that her mother with dementia did not acknowledge her dementia disease and felt overruled by the family in the FamHC when they needed to coordinate how they could handle the mother’s financial issues:
“She was involved in the conversation, but she has unrealistic perceptions about herself—she thinks that she can learn how to use a computer, pay bills and administer her online bank affairs on her own. It’s difficult to correct her without her becoming angry, because that is what she really thinks” (daughter, 44, family 1).
When the relative with dementia lacked insight into their disease, or the cognitive challenges became too difficult, family conversation could become difficult as well. Family members’ desire to avoid upsetting the relative with dementia could be a barrier to their speaking freely about the dementia disease and sharing responsibilities within the family.
The findings clearly show that FamHCs were of great significance to both individual family members and to the family. The findings highlight that FamHC creates possibilities for families to share feelings, experiences, and burdens related to the relative with dementia. This is consistent with previous research on FamHC by Benzein et al. (2015), Persson et al. (2014), and Östlund et al. (2016). These studies described how family members’ narrating, listening, and reconsidering interactions with each other during FamHCs lessened the family’s suffering and facilitated healing that strengthened family cohesion   .
Our study shows how FamHC provided opportunities for families to achieve clarity and control over practical challenges following a dementia diagnosis in a family member. Family cooperation became important when the relative with dementia could no longer make decisions, requiring family members to step in to help and take responsibility. FamHC can be a way to help the family navigate through uncharted waters. A possible explanation for this is found in Antonovsky’s (1987) theoretical approach to a sense of coherence, which relates to better health and quality of life outcomes. A sense of coherence comprises three elements: comprehensibility, manageability, and meaningfulness .
Comprehensibility refers to a belief that things occur in an orderly and predictable way and a sense that one can understand life events . Our study showed that when a family is confronted with dementia, comprehensibility can be gained through FamHC. Gathering specific knowledge about dementia and preparing emotionally as a family for the challenges that can arise during the dementia process appears to increase comprehensibility for the family.
Manageability is a belief that one has skills and abilities, support, and the necessary resources to take care of things; that things are manageable and within control . Engaging in FamHC appears to increase manageability in families by increasing competence for tackling the challenges associated with the disease. Knowing how to react when the dementia condition becomes obvious makes it easier for family members to spend time with the person with dementia.
Meaningfulness is a belief that things in life are interesting and a source of satisfaction, and that there is good reason and purpose to care about what happens . FamHC creates a situation for the family to listen to each other’s different experiences. The understanding and insight gained through FamHC are relieving and appear to increase meaningfulness for the family. FamHC offered families a sense of coherence through togetherness and jointly finding a way to cope with the new situation in the family.
This study also showed that FamHC created a situation where the family could speak naturally about the dementia process and what it meant to them, bringing peace and relief to the family. These findings are consistent with other studies’ findings that allowing family members the opportunity to talk with their relatives during FamHC was a positive experience . Benzein et al. (2015) also found that the opportunity to narrate, listen, ask each other questions, and reflect on other family members’ stories helped families to create a full picture of their situation . Our findings suggest that FamHC promotes resilient functioning in families, which contributes to family members’ wellbeing. Luthar and Cicchetti  defined resilience as a dynamic process wherein individuals show positive adjustment despite negative life circumstances that are known to be associated with adjustment difficulties. Walsh  found that drawing out and affirming family strengths in the midst of difficulties helps to build a sense of confidence within a family, and that sharing beliefs fosters family resilience. In caregivers of persons with dementia, resilience has been found to be inversely related to depression, anxiety, and perceived burden, and therefore positively related to health and wellbeing .
Another important finding was that involving the relative with dementia in the FamHC was not necessarily beneficial for the family, especially when the person with dementia lacked insight into their disease or the cognitive challenges became difficult. In previous studies investigating FamHC with other chronic illnesses      , the person with the disease participated in the conversations, but our study showed that this was not always beneficial. In their theoretical work of family systems nursing, Wright and Lehey (2009) described one of five critical attributes to the concept of family as: “the unit’s caregiving functions consist of protection, nourishment and socializations of its members” ( , page 54). This could justify FamHCs being held without involving the relative with dementia as a means to nourish the other family members, but also to protect the person with dementia from being exposed or hurt. Agerskov et al.  argued that family nursing provides a confidential room for family members who cannot express powerlessness and frustration when the whole family is together. In this light, FamHC may ethically be held without involving the person with dementia if it benefits family members’ ability to cope with the situation.
Not involving the person with dementia in FamHC may be controversial in regard to the political and professional intention of always involving the person of interest. Patient involvement is of great international interest  . Overall, respecting patients’ autonomy and putting them in charge of making decisions about their care is considered an ethical requirement. However, in a dementia setting the notion of autonomy as “making your own choices” is not sufficient when persons with dementia are dependent on the care of others . Mackenzie and Stoljar (2000) introduced a relational approach to autonomy   that highlights the social context within which all individuals exist and acknowledges the emotional and embodied aspects of decision makers. A relational autonomy approach acknowledges the central role of others in decision making (e.g., family members’ role in relation to a person with dementia who lacks insight regarding the disease), where an individual’s interests are developed jointly with others. FamHCs that include only the family members are not disrespectful to persons with dementia; rather, they allow persons with dementia to retain their selfhood and autonomy.
The open participant format of the interviews was the primary strength of the study. One limitation was that we could not include all persons with dementia as study participants because of cognitive dysfunction and personality changes and could not include all family members as participants because some declined to participate. The adult children, children-in-law, and grandchildren who participated in the study provided important perspectives that support the relevance of this qualitative study. However, the perspective of persons with dementia or the perspective of a healthy spouse engaging in FamHC were not examined in the current study and should be included in future research.
To strengthen the credibility of the findings, the researcher who conducted the participant interviews did not participate in the FamHC sessions. The interviews were conducted as individual or joint interviews, depending on the family’s preference. After participating in FamHC, family members assumed that the study interview was also family focused. This was an advantage to the study, since the interplay among family members gave valuable insight to the meaning of FamHC for both individual family members and the family.
The current study’s qualitative design was a strength because it provided an opportunity to discover and document unanticipated outcomes, such as family members’ concerns about involving the person with dementia in FamHC.
Another study strength was that the intervention was implemented as a part of the dementia consultant’s every day work. The discussions that surfaced during FamHCs were evaluated based on a realistic execution of dementia care in an actual care setting characterized by normal daily business and many patients. This study’s participants were engaged in FamHC one month prior to being asked to be interviewed for the study, so their participation in FamHCs was independent of the study itself.
Our study shows that FamHCs are beneficial to families suffering from the effects of dementia in a family member and are important to both the individual family member and the famil. FamHC provided peace and relief to the family by allowing them to speak naturally about the dementia disease and what it meant to them. It also provided an opportunity for the family to gain clarity and control over the practical challenges posed by dementia. FamHC helped the family to navigate inherent difficulties and offered them a sense of coherence by enhancing their ability to cope with the new family situation. FamHC promotes resilient functioning in families, which contributes to family members’ wellbeing.
Involving the person with dementia in the FamHC was not always beneficial for family members or the person with dementia, suggesting that as dementia progresses, FamHC should support family members in the practical challenges in the spirit of what the person with dementia would have wanted, promoting selfhood and autonomy to the extent possible.
8. Relevance to Clinical Practice
Conducting FamHC with families of people with dementia obliges dementia consultants to embrace the belief that illness needs to be treated as a family affair. Conducting FamHC requires knowledge about both the family and the person with dementia to facilitate a conversation that provides the family with the support they need. Facilitating FamHC requires special skills gained through education, practise, and feedback.
Engaging in FamHC at the beginning of the dementia journey when the diagnosis is made could be advantageous. At this point persons with dementia can still contribute to the conversation about their wishes for the future, allowing FamHC to involve the person with dementia while simultaneously contributing to the family’s well-being. Read et al.  found that persons with newly diagnosed dementia have many thoughts about and wishes for their future but find it difficult to communicate these to the family. In this situation, FamHC should involve the person with dementia. Deciding not to involve the relative with dementia in FamHC in specific situations requires thorough knowledge of the family and the relative with dementia to avoid indiscriminately excluding the person with dementia. When including the person with dementia in FamHC does not succeed, the family’s need for another FamHC with each other must be prioritised to support them in processing their experiences and help them arrange to handle the practical challenges together in the spirit of what their relative would have wanted.
The authors wish to thank the participants who generously shared their experiences, in the hope that it will lead to a better understanding, care and support of persons with young onset dementia.
The Open Access Fund of University of Southern Denmark has funded the publication fee of this paper.
Conflicts of Interest
The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.
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