Six categories emerged from qualitative analysis, (1) Integration in everyday (professional) life, (2) Effects on dementia symptoms, (3) Preservation of a positive self-image, (4) Organizational aspects in everyday (professional) life, (5) Societal challenges, and (6) Role of informal caregivers. Key findings from the interviews are presented in Fig. 1 and provide a framework to illustrate the interplay of components that contribute to the inclusion of psychosocial factors in the care and treatment of people with dementia.

Fig. 1

Interplay of key components when investigating psychosocial factors in dementia care structures

Integration in everyday (professional) life

Both groups, health care professionals and informal caregivers, recognize the value of integrating psychosocial factors in care, especially when they are aligned with the biography of the person with dementia. Health professionals emphasize using current interests and resources to enhance autonomy. A volunteer highlighted this by saying that “just because someone used to be in the church choir doesn’t mean they want to sing in the church choir now, or any other choir..” The importance of resource adaptation, as well as exploring the sudden decline of skills, was highlighted by an employee in a care facility who shared an example: “We have a resident who has been doing crossword puzzles, solving them, all her life. All of a sudden she did not do it anymore. (...) Okay, hmm until a week ago she had this resource and what has changed now? (...) In the end it was that the eyesight just deteriorated. Yes then she got the questions read to her and lo and behold she could do the crossword puzzle again..” Conversely, informal caregivers tend to emphasize that it is important to use psychosocial factors flexibly to respond to the current mood and situation of the person with dementia. For instance, an informal caregiver described adapting to her father’s claim that he was too busy for the everyday companion by engaging in an activity that matched his interests: “(…) the everyday companion went out with him and raked the leaves and disposed of them. So always adapted to the situation, they [everyday companion] look very sensitively how they just find access to him [person with dementia], because otherwise he sends them away..”

Occupational therapy was widely mentioned and used by both groups. Health professionals specifically mentioned other forms of therapy, such as music and cuddle therapy. However, health care professionals stressed the importance of recognizing therapists’ professional competence and “the widespread denial of this therapeutic competence when dealing with dementia patients,” especially from the perspective of family members.

Although both groups reported incorporating psychosocial factors into dementia care, different interventions are applied by both groups. Health professionals cited implementing singing, sports and cultural activities, creating routines, adapting living space, and training informal caregivers in their everyday professional practice. In contrast, informal caregivers reported more individualized approaches such as utilizing the support of an everyday companion and creating personalized photo books. One informal caregiver reports that “it has become a ritual to go through the photo album with him [person with dementia] at least once a week, and it has been a completely new experience for him each time. .”

Effects on dementia symptoms

In general, the effects of psychosocial factors on the course of dementia are perceived as exclusively positive. The positive impact on everyday functioning, the activation of cognition and attention as well as on BPSDs was emphasized. A care facility manager reported that family members called her because of her psychosocial support services and said, “Wow, he’s [person with dementia] become much calmer. Or he [person with dementia] has the will to write short sentences. He [person with dementia] can get in the shower by himself again..”

Both groups perceive social inclusion as the most important psychosocial factor for a positive effect on the course of dementia. As a result, the loss of social relationships can promote worsening of dementia symptoms leading to loneliness and depressive symptoms. “Interpersonal loss is traumatizing for everyone. If we no longer have interpersonal relationships, then the negative curve rises and the dementia will in any case be noticeably progressive,” as a care facility manager stated. The reversed effect was emphasized from an informal caregiver who observed that “especially the little grandchildren (...) actually manage to make him [person with dementia] more cognitively fit, active and agile as well..”

Preservation of a positive self-image

Both health professionals and informal caregivers stressed the importance of promoting an environment in which a positive self-image can be preserved. One way of doing so is through engaging in meaningful activities. The participants emphasized that while doing so it is important to adapt these activities to the capacities of the person with dementia and to provide external encouragement. It should be noted that feelings of success can be quite different. An employee in a care facility noted that “my sense of accomplishment is different from that of my partner or my friends. And I think that the affirmation of those little moments makes a lot of difference, even if I’m only successful with little things..”

In contrast, regimentation and the denial of competence seems to lead to minimizing the expression of the self. For instance, an occupational therapist reported that when people with dementia are “limited in their ability to make decisions, they simply shut down or do nothing out of frustration and lack of self-motivation..”

While social inclusion was identified by both groups as an important psychosocial factor in dementia care, the quality of social relationships should not be ignored. These negative effects were also noted by an informal caregiver who had observed people with dementia in the nursing home during the pandemic who “flourished due to limited contact with family members because no one was nagging at them [person with dementia] anymore saying, oh you can’t do that anymore, why can’t you do that anymore? You used to love to play pinball, why don’t you play pinball anymore? .” The absence of negative social interaction created an environment in which people with dementia could maintain a more positive self-image.

Organizational aspects in everyday (professional) life

Lack of funding, inflexible frameworks, bureaucracy, and lack of transportation prevented health professionals and informal caregivers from incorporating psychosocial factors into dementia care. Health professionals mainly cited legal requirements, including staffing requirements, as well as inflexible service conditions and lack of funding as barriers to integrating effective psychosocial factors in care. A care facility manager reported the difficulty of integrating psychosocial measures because, for example, “he cannot bring to life the situation of buying groceries and then boiling down applesauce from the purchased apples because there are simply too high hygienic and safety hurdles.” The inclusion of psychosocial factors for informal caregivers depended mostly on funding. Further, challenges are seen regarding transportation options, time, and the availability of the services/therapies in the area. One informal caregiver pointed out that “what is absolutely underestimated is the time it takes to get the person with dementia in the chair and get them dressed. (...) It can take an hour for them to even leave the house (...) and all the stress of picking them up for an hour of music therapy is sometimes just too much. Especially since you cannot afford such services until you reach a certain level of care.”

The suggestions for improvements varied between the two groups. While health care professionals would like to see less bureaucracy and more financial options, informal caregivers would like to see more inclusion of the interests and biographies of people with dementia in care and a change in medical service structures. For instance, one informal caregivers complained about a “lack of services/funding for accompaniment to doctor’s visits’ and about inadequate accommodation of people with dementia in hospitals and wish “that one had the possibility to accompany dementia patients to the hospital and that extra rooms were created for this purpose.”

Societal challenges

Even when the moderators directed the discussion toward the experience of psychosocial factors in dementia care, the participating health professionals and informal caregivers frequently returned to the societal challenges of integrating people with dementia. They identified two main barriers to the participation of people with dementia in society: One, that people with dementia can only experience social participation through external support, and two, that society lacks understanding of people with dementia. Health professionals highlight the social fear dementia creates in others leading to avoidance of people with dementia. Participants also indicated that having dementia leads to perceived social worthlessness, as “performance in society is associated with cognition.” In addition, informal caregivers complain that the BPSDs, such as aggression, wandering, and behavioral challenges, are not accepted in society and that the self of people with dementia is disrespected because people talk about them instead of with them. As an informal caregiver reported, people came up to her and complained that her mother was “doing things that were out of convention instead of talking to her even though she was standing next to me.”

The groups also identify ways of removing barriers to participation. Specifically, they advise promoting awareness and participation through joint activities between people with and without dementia. A care facility manager reported to organize senior parties because in this way “everyone comes together and everyone has the same feeling of accomplishment because such a party is the same for everyone.”

Role of informal caregiver

Generally, it emerges that it is important that informal caregivers choose a positive way of communicating with people with dementia. While health professionals advise informal caregivers to use person-centered communication that focuses on the needs of the person with dementia, informal caregivers report communication styles that they have adopted individually and that always prove the person with dementia right in order to avoid conflict situations. An informal caregiver mentioned that it is only important that “the answer satisfies him [person with dementia], so by no means make an objection (...) and always answer in the same casual tone.” Only one informal caregiver reports having sought professional help and has since used “a change of perspective in order to be able to put myself [informal caregiver] in the shoes of the person with dementia and to communicate with him at this level.”

Beyond communication styles, health professionals advise to involve informal caregivers more and to inform about dementia. This is the only way to “increase a greater understanding of the disease and has further a positive influence on the person with dementia in terms of preservation of independence, stability of the home situation and the inclusion of psychosocial factors in everyday life,” as pointed out by a volunteer.

Overall interpretation

Despite differences in the care and treatment setting of people with dementia, the importance of psychosocial factors in dementia care was always emphasized. An overall synthesis of the categories generated from the data material reveals a comprehensive understanding expressed as the latent theme: A desire to do the best for people with dementia to enhance their everyday functionality and quality of life. It represents a conflict, in which health professionals and informal caregivers wanted to do as much as they can but are prevented by many factors.