The analysis identified three overarching themes: Acknowledging dramatic change; Ensuring the right help at the right time; Self-taught social support
Acknowledging a dramatic change
The first overarching theme in the narratives was the importance of acknowledging the dramatic changes in the participants’ everyday life. The participants described a demanding, ongoing everyday situation that was aggravated by various “phases”. This ongoing dramatic change was so compelling for the participants to convey, that it was challenging to make them reflect on social support as a defined topic. They wanted to tell the whole dramatic story of what had happened in their own family.
The participants spoke about an increasingly demanding everyday situation that began with incipient concerns related to changes in behaviour, everyday skills and the conduct of the person with dementia. These participants gave examples:
There were very specific things that happened – for example: buying three cucumbers. She does not eat cucumbers!
(father); Then she started more and more (…) unable to take care of herself, (…) forgot to get dressed
(spouse). She wandered out at night (…) suddenly it started to become unsafe
(daughter); It is tough to have 24/7 care
These concerns were often linked to challenging communication within the family and with the welfare system. Family members had different views on the severity and necessity of action.
The theme Acknowledging dramatic change
is further based on the participants’ stories of processing and grieving that someone close to them had suffered a serious illness. At the same time, everyday life became more and more demanding, and one had to work to obtain social support for oneself. The spouse of a man with early dementia said: There is something about… it’s your spouse, right, and then you see the decline in function. And then everyone says to you, oh… now you have to take care of yourself. How am I supposed to do that?
Dramatic changes in everyday life are also linked to the participants’ stories about the transition to a nursing home. These themes in the stories have a clearly before-and-now perspective; separating experiences into what happened before and after the transition to the nursing home. Everyday life with close family broke down due to the institution’s routines, which represented both mental and practical relief, but at the same time often changed the continuity in next of kin relationships. A male spouse said: Yes, from the fact that she ended up in the nursing home there, it is clear that we have a completely different life. I live at home alone; she lives over there alone.
The results show that the participants described the development of social support from a family and life course perspective. Dramatic change as a characteristic of next of kin’s experiences is based on a long time, often years, with breaches of expectations, lack of predictability, and risk in everyday life. The participants had been working to clarify the prospects of social support from family, friends and the health and care services. The participants experienced that social support, as they had known it before, was put to the test and changed.
Ensuring the right help at the right time
The importance of ensuring the right help at the right time is the second recurring theme in the narratives of the participants. The participants focused on challenges related to attempts to ensure help, as well as a lack of continuity in follow-up and further help from public services.
Stories about contact with GPs and other service providers were inconsistent. Some people were met with understanding; others described practices that lacked coherence and commitment, as this adult daughter said: The support system depends on the individual. (…) Seeing the whole person is a very important point.
The flow of information about the current services offered was described as very different among municipalities, service levels and service providers. Participants generally emphasised the importance of service providers being engaged and maintaining continuous contact in the follow-up.
Feeling lonely while waiting for examinations from GPs and the specialist health services was also pointed out as challenging. Many participants reported being alone with a challenging everyday life. That waiting time, it has been the worst. (…). For a year and a half, no one kept in touch with us
(spouse). Participants gave constructive suggestions for improvement, such as this spouse:
(Provide) a dialogue partner early, and information early (…) so you do not feel completely alone.
Challenges in getting people with dementia to accept help were also conveyed. Several participants experienced being alone with the motivational work: My mother came to the day centre after a lot of discussion. (…) but then they called me, and she wanted to go home, and I had to come and get her
(daughter). Other participants conveyed successful collaboration about motivation to receive support, emphasising the importance of facilitated support. Standard solutions such as the day centre, dementia school, or home nursing do not suit everyone and are suitable at different times. A day centre is not relevant for a 60-year-old man
The theme Ensuring the right help at the right time
also refers to the participants giving constructive suggestions for improving the services for people with dementia in nursing homes: These are the ones
[our closest ones] we are thinking about
(male spouse). Relatives’ experiences of social support, and the quality of life of the person with dementia were described as intertwined. Social support was described as a family matter.
The participants conveyed different experiences of how nursing home employees invited relatives to discuss expectations and their role as next of kin. This included questions about how they could participate in everyday life at the nursing home and contribute to the follow-up of the person with dementia. Lack of resources, the number of service providers, and physical and social activities in the nursing home were experienced as things that contributed to worry and experiencing inadequate social support in one’s own everyday life. A male spouse put it this way: This is not a good place for her. There is far too little going on. It’s not a life.
Several next of kin emphasised that the experience of social support was also promoted by providing space for relatives to contribute.
The theme Ensuring the right help at the right time
conveys a gap between the need for social support and the competence and facilities of family, friends and social services in promoting social support. Social support was described as relationally and contextually intertwined with the social support and quality of service offered to their loved ones. The participants emphasised the importance of involvement and participation, continuity and coherence in social support.
Self-taught social support
The third theme analysed from participants’ narratives refers to next of kin having to learn how to promote social support by themselves. This included different ways of interacting and communicating in both public and private arenas. They learned this new communicative competence of social support gradually and largely on their own.
The communicative competence included knowledge about how the available services are structured and organised, and what information is perceived as relevant in mediating services. To help document their everyday life challenges to the welfare services, the participants said they wrote diaries and logs about everyday life. This provided concrete examples to refer to during meetings regarding the needs in welfare services. One participant said: If you present that log to a professional, then that professional will immediately be able to see that there are no interpretations here, (...) only observations.
In the process of designing social support, training courses for next of kin were described as positive contributions. They provided an opportunity to ask questions about general topics, such as diagnoses, legal rights and relevant welfare services, and communication with people with dementia. Participating in courses for next of kin made it possible to experience direct social support through the exchange of experience, understanding and emotional support.
The participants also emphasised the importance of the group leader’s competence in ensuring a dialogue in which everyone had their say and experienced being acknowledged. Others underscored that support groups must last longer than a few months, a “training course part 2” (…) with next of kin who have developed in relation to the disease
(male spouse). Some participated in new discussion groups, group counselling, or dementia school along with the person with dementia. Involvement in user organisations, and sharing knowledge and experiences were also described as activities that helped to explore and develop social support over a longer period.
Self-taught social support
also included experience in communicating with one’s own siblings, relatives and siblings of the person with dementia, adult joint children, and the spouse’s children, friends and neighbours. The participants referred to challenging conversations exploring the roles and functions of family members related to informing, organising everyday help and promoting relief, health and well-being for both the next of kin and the person with dementia. Some participants talked about how when friends withdrew from the relationship, they had visited them, explained the situation, and emphasised the importance of their friendship and social support.
The spouse of a man with early onset dementia spoke about how she had to teach herself, her family and her friends how they could best contribute support in the demanding situation. I phoned his best friend and thanked him for visiting him for coffee (…), but I said I need you to pick him up when I’m at home.
The participants underscored the importance of organising time to be alone, continuing with some leisure activities, and allowing oneself to share the humour in everyday life as a means of experiencing emotional and social support. Participants also said that openness helped them to maintain relationships, and secrecy contributed to challenges in maintaining social networks. According to the participants, being open about the diagnosis of the person with dementia was a particularly challenging communicative skill. Several participants requested communicative help and support from welfare services.
Self-taught social support
represented a significant part of the participants’ stories. Social support (as they knew it from their previous lives) became inadequate and the participants described their challenges and creativity in a new life situation. In order to be able to collaborate with both a loved one showing behavioural changes, as well as family, friends and welfare services, next of kin had to learn concrete skills in communication that helped to strengthen their social network. In this study, the development of social support among the next of kin of people with dementia included both social and personal development related to communicating with different parts of their social network.