What matters most: Exploring the everyday lives of people with dementia

Research on what matters most to people with dementia is crucial for developing tailored interventions and support. This study explored how people with dementia experience their everyday lives, providing insight into what is important to them to live the best they can at home.


| INTRODUCTION
Dementia significantly affects an individual's ability to perform everyday tasks, making it an urgent public health issue, particularly as the population ages. 1 While policy initiatives aim to enable people with dementia to remain at home, 2 community services are frequently reported as suboptimal and not person-centred. [3][4][5] Numerous intervention studies appear to be disconnected from the everyday experiences of those living with the condition, for example, focussing only on managing behavioural and psychological symptoms of dementia. 6,7 The 'everyday' can be described as a combination of the familiar and mundane, whilst being habitual in nature. 8 Everyday sociology examines these experiences in shaping individual's perceptions of themselves, others, and society. 9 This approach originated from a transition studying 'the extraordinary' towards 'the commonplace', which was previously disregarded. Reflecting the language of the times, Schütz & Luckmann 10 explained this positioning: "the world of everyday life is consequently man's fundamental and paramount reality" (p.3), and "a basic spatial, temporal, and social arrangement" (p. 103). Building on these foundations, Bech-Jørgensen 11 described everyday life as an interplay between everyday conditions and how individuals manage them. In addition, everyday life involves exploring and attributing meaning to ordinary activities. 12 In dementia studies, a focus on everyday life can help understand how people with dementia navigate daily challenges and what matters most. This everyday perspective aligns with the citizenship framework, grounded in sociological and political principles, 13 which emphasises the rights and participation of marginalised groups like those with dementia. 14,15 Taking this concept one step further, Nedlund et al. 15

| Study design
We used a qualitative research design inspired by an existentialphenomenological approach 17 and Ward et al.'s socio-relational and embodied-material perspective. 18 This perspective positions people with dementia as actively reconstructing their realities. To support the participation of people in the research process, we adopted a mix of flexible data collection methods. 19 We used open interviews in the participant's homes, home tours, and walking interviews. If the participant was willing to do so, the interviews took place in two or three sessions. This approach increased the credibility of the findings and allowed for mutuality and reciprocity in the research process. 20 We followed the COREQ guidelines 21 to report the findings.

| Participatory collaboration by people with dementia
This study aimed to actively involve people with dementia in the research process 22,23 using inclusive methods of data collection and analysis. [24][25][26] As this approach is new to the Netherlands, we sought advice from the UK-based Dementia Enquirers. 27 This resulted in the formation of a Dutch group of people with dementia, called Brain Power. The group, consisting of seven members aged 54-70, was involved as co-researchers, specifically during data analysis.
Brain Power held four meetings between November 2022 and April 2023.

| Home tours and walking interviews
We used home tours inspired by Pink. 28 Participants were asked to show their homes to elicit narratives. We used walking interviews to understand how people interact with their neighbourhoods. 25

| Participants
Participants were purposively sampled based on self-reported, or professionally reported, dementia or MCI diagnoses, living at home, and capable of providing informed consent. A diverse sample was sought in terms such as gender, marital state, and educational background. Recruitment was conducted through three meeting centres and two healthcare organisations.
Fifteen people with MCI or dementia agreed to participate (Table 1). There were eight women and seven men, aged 65-87 years, with diverse education levels. Most participants did not disclose the type or length of their condition, although they seemed in the mild or moderate stages of dementia. All except one participant took part in a home tour and the majority of the sample declined walking interviews either because of the weather and/or underlying physical health conditions. Two participants suggested alternatives: a cycling tour and a museum visit by car.

| Data collection
Data were collected from May to October 2022. Participants were informed about the study's goals before obtaining written or oral recorded consent and provided with the option to withdraw at any time. A process consent approach 31   Findings were discussed multiple times with all authors to ensure investigator triangulation. 33 Atlas.ti software was used for data management and analysis.
To ensure authenticity and strengthen credibility, we engaged with the Brain Power group during data analysis. Reflection and nonverbal methods were used to prompt discussion, such as bringing to the group an object that symbolises what matters most in their everyday lives. Subsequently, the emergent findings were presented to the participants who provided input on whether they aligned with their own experiences, or not and needed further attunement.
Inspired by Synnes, 34 facilitators also created poems using contributions from group members and shared them with the group as a form of reciprocity.

| Ethical considerations
The study followed The Dementia Enquirers Gold Standards for Ethical Research. 35 The study protocol was approved by the Research Ethics Committee of HU University of Applied Sciences (reference number 2022-5).

| Findings
We will describe the findings about the dimensions of everyday life that matters most, followed by Brain Power's reflections on these findings.

| Dimensions of everyday life
Six dimensions of everyday life emerged in the data. Living alone also means managing dementia symptoms on their own. One participant emphasised the advantage of maintaining independence: Others have the disadvantage of having a partner.
What do these partners do? They take everything over.
As a result, they no longer received stimulation to do things themselves. I have to! (Maria) Some participants had relationships with their pets and put effort into caring for them. One participant described the companionship of her dogs and talked to them with sweet words like 'girl'.

Family
Many participants showed photos of their children and grandchildren, expressing joy in spending time together and gratitude for HUIZENGA ET AL. There is always someone to ask if something is needed.
[…] Enjoyable conversations, and sometimes they come   Others referred to their head, such as metaphorically "it waves a bit", and reported feeling tired or easily overwhelmed by sensory input. They adapted by taking rest breaks. Some struggled with concentrating on complex tasks, such as finances, due to difficulties with attention and visual processing. Participants also noted variations, with good days and bad days. Emotional states were affected, with some feeling irritable due to information-processing issues.
Temporal orientation was a challenge as one participant put it "time fades away". Different aids were mentioned, including special clocks, alarms, and routines. Orientation in the environment was another challenge for some participants, and confusion about the location could be frightening: Talking about their experiences with dementia and receiving support from others were considered essential.

Being open to help and support
Participants shared their experience of receiving adequate support or facing a lack of assistance in their daily lives. Living with dementia required openness to receiving help and support tailored to their specific needs. This can be divided into professional and informal support, and the wider society. Additionally, one participant highlighted the need for more inclusive communities for young people with dementia to fully participate in society.

| Reflection on the findings with co-researcher group Brain Power
The co-researcher group Brain Power provided their opinions on two issues that emerged during data analysis. The first was the finding that many interviewees discussed their past experiences, which was not found in the scoping review. 16 The group shared possible reasons for this based on personal experiences. Firstly, the past can serve as an anchor for who you are and who you are closely connected to, since the future is uncertain. Secondly, the past is more easily accessible in memory than short-term experiences, making it easier to communicate about something you still know. However, some members cautioned against overemphasising the past by professionals as it could give the impression of incapability. Others emphasised the importance of living in the present, rather than dwelling in the past or future.
The second issue addressed the finding that what matters most was often implicit in the answers during the interviews. We used a non-verbal approach by asking the group to bring a cherished object that symbolised what matters most in their everyday lives. The objects included a telephone that supported daily structure, a family photo that provided emotional support, a picture of a piano that represented love for music, and a book about community building in the army. One member shared that her social network was most meaningful to her. All shared stories confirmed the interview findings.
During the meetings, the group highlighted their experiences of not being understood, being excluded, and feeling patronised. Some members experienced misconceptions about dementia on a daily basis. They categorised these into two variants. The first was the offencive belief that dementia meant being in its end stage. The second was the feeling of needing to justify their disability as others did not perceive or acknowledge their struggles: "You do not look like you have dementia". The group's message was clear: treat us without prejudice or preconceptions and recognise that dementia encompasses more than just memory problems.
In conclusion, the group was consulted on the six dimensions and subcategories of everyday life (see Table 2) and the visualisation (see

| Methodological considerations
The sample reflects a diversity of participants from different backgrounds. As Christensen and Jensen 51 state, inquiry of everyday life has the potential to explore intersectionality. During the phase of conducting interviews, reflective practises were employed with coauthors to mitigate potential biases. The interviews were conversational and the use of mobile methods was done in attunement to each person. 52 This guided spontaneity, together with the mix of data collection methods resulted in rich data. Going for a home tour or outside democratised the researcher relationship. The spaces elicited narratives and memories and participants could show things instead of just talking. So these methods are helpful in inclusive research. 53 The walking interviews in the neighbourhood enriched the datacollection when they were undertaken. However, several participants were not willing to go due to the weather or mobility issues. Better preparation and more information about what the walking interview entailed could have improved uptake. The partner's presence during interviews was suitable for a relationship approach but could also influence participant responses. Notably, partners tended to correct answers as if it was important to tell their reality. By focussing more on the participant, for example, by inviting the participant for a home tour or walking interview often shifted the attention.
The study employed a rigorous data analysis process. The data were analysed collaboratively with the second author and subsequently reviewed by the entire research team and co-researcher group Brain Power. Participatory collaboration with the group Brain Power during analysis enriched the study's findings, adding an additional level of understanding and authenticity. This collaboration with Brain Power, as well as the first author's engagement in the broader community of people with lived experience, helped to raise the profiel and potential for participatory research work with people with dementia in the Netherlands. For example, going forward, Brain Power will co-produce a magazine (also know as a 'zine') with the study's findings and their stories and tips for peers. This is a way of dissemination with people with dementia that is attracting interest in the field and as a source of meaning-making and impact (see for example Everyday and Dementia Zine Series 54 ). A possible next step is that this group contribute to setting the agenda for future follow up research on interventions based on the six dimensions of what matters most and actively take part in these projects as coresearchers.

| Implications for research and practice
This study proposes a shift from a care-based approach to the lens of everyday life. This changes the focus to facilitating and enhancing what matters most to people with dementia in their everyday lives, rather than solely treating dementia symptoms. The six dimensions provide a framework for psychosocial interventions that aligns with this. Social work, as a discipline that values the everyday life world as a central area of concern, 55 can play a vital role in advancing this shift