Caring for home‐dwelling parents with dementia: A qualitative study of adult‐child caregivers' motivation

Abstract Aim To explore adult children's motivation in caregiving for their home‐dwelling parents with dementia. Design Qualitative design with a phenomenological approach. Methods Semi‐structured individual interviews with 21 adult sons and daughters who were caregivers for a parent with dementia. Data were analysed using systematic text condensation. Results Inspired by self‐determination theory, three categories were identified in the empirical data representing the main motivational drivers for adult‐child caregivers: relatedness (to the parent with dementia, the parent's spouse, other persons), competence (in handling dementia, in the parent's need) and autonomy (freedom of choice, innate values and tasks). Caregivers report relatedness as their key motivational driver. These results imply that nurses and other health professionals should value the importance of relatedness when interacting with dementia caregivers and establish belonging support structures. Further research should generate more knowledge of the positive motivational drivers, including interventions to improve relatedness, competence and autonomy.

Most research in the caregiver field has examined family caregivers as a homogenous group, without differentiating spouses from adult children of a PWD (Tatangelo, McCabe, Macleod, & You, 2018). Adult children are likely to juggle caregiving and other roles such as work and responsibilities to their own families; spouse caregivers are more likely to undertake a full-time caregiving role (Conde-Sala, Garre-Olmo, Turró-Garriga, Vilalta-Franch, & López-Pousa, 2010). This study therefore contributes to a more differentiated knowledge of caregiving regarding adult children to PWD.

| BACKG ROU N D
So far, research has focused on the challenges of being a caregiver to a PWD. There is a need to draw attention to other elements of caregiving (Lloyd, Patterson, & Muers, 2016) such as satisfaction, autonomy and expertise (Yu, Cheng, & Wang, 2018). Motivation for caregiving in the dementia context is crucial in informal carers' experience of their role (Quinn, Clare, & Woods, 2015) as it energizes behaviour, initiate, generate and increases task engagement and direct actions. Motivation is thus understood as the energy in people that drives their actions or non-actions. Motivational support increases caregivers' sense of well-being, psychological growth and resilience (Weinstein & DeHaan, 2014). In a review article, Greenwood and Smith (2019) found the motives of family caregivers to persons with dementia, for example reciprocity, commitment, love, duty, loyalty, obligations and responsibility, to be identical with their reasons to sustain as caregivers. Still, the motivations for taking on and staying in the caregiver role remain an area not fully understood (Greenwood & Smith, 2019;Quinn, Clare, & Woods, 2010). Thus, studying caregiving using a theoretical motivation framework is recommended as it can further help identify and categorize motivational aspects (Quinn et al., 2010).
In this study, caregivers' motivation is addressed using self-determination theory (SDT) (Ryan & Deci, 2000, 2017 whose premise is the three psychological drivers of motivation: the need for autonomy, competence and relatedness. Their satisfaction would be essential for individual psychological growth, subjective well-being and optimal human functioning, while thwarting those needs can lead to amotivation (Ryan & Deci, 2000, 2017Weinstein & Ryan, 2010;Williams et al., 2014). When the need for autonomy is satisfied, one experiences a sense of volition and the sense that one's actions are endorsed by oneself, conferring a feeling of ownership over actions.
The need for competence relates to mastery and perceptions of performing tasks with confidence, effectiveness and being capable of achieving desired outcomes. The need for relatedness is a feeling of mutual belonging, genuine connection with others and experiencing giving support to and being supported by others (Ryan & Deci, 2000, 2017. Self-determination theory has been applied to several healthcare contexts (Ng et al., 2012;Ntoumanis et al., 2020) such as caregivers' motivation for persons with cancer (Kim, Carver, & Cannady, 2015;Ng, Griva, Lim, Tan, & Mahendran, 2016) and chronic pain (Kindt, Vansteenkiste, Cano, & Goubert, 2017) as well as to caregivers caring for relatives with different long-term illnesses (Dombestein, Norheim, & Lunde Husebø, 2019). To our knowledge, SDT has not yet been applied to adult children caring for home-dwelling parents with dementia. There is a lack of qualitative studies expanding the SDT framework and understanding the phenomenon of caregivers' motivation, (Ng et al., 2016) also in a dementia context (Pierce, Lydon, & Yang, 2001). Therefore, this qualitative study explores adult children's motivation in caregiving for their home-dwelling parents with dementia. This aim will be addressed through the following research question: How can adult children's motivational drivers for caregiving be described using self-determination theory?

| Context
In Norway, about 80,000 persons live with dementia. Approximately the same number are primary caregivers for these persons, while about 270,000 are secondary caregivers (Norwegian Ministry of Health & Care Services, 2015). As in other Nordic countries, Norway's public healthcare system is constructed for taking care of PWD with supplements from informal caregivers. Specialist care is provided by regional health services and consists of hospitals and specialized units such as memory clinics and geriatric hospital wards.
More than 300 Norwegian municipalities are responsible for primary care like general practitioners, home care, day care centres and nursing homes (Norwegian Ministry of Health & Care Services, 2018).
In Norway, adult children are not legally required to assume care of their parents, but many do (Bøckmann & Kjellevold, 2015). The care provided by adult children to PWD includes for example transportation, assistance with practical tasks, support for personal care and medical treatment, but mostly emotional support including spending time talking with the parent, visiting or calling to ensure that the parent is safe. In the home-dwelling period, home care services are common, often starting small and increasing as the dementia progress. PWD usually live at home as long as justifiable possible but moving the parent into a nursing home is often normal at an advanced stage of the illness (Norwegian Directorate of Health, 2018).
The participants in this study had home-dwelling parents with dementia in different parts of a large municipality in Western Norway containing urban areas and rural districts.

| Study design
This research study adopted a qualitative design (Malterud, 2001;Polit & Beck, 2018) with a phenomenological approach (Creswell & Creswell, 2018) to explore the lived experiences with motivation in the caregiver role as described by the participants. The method for data collection was individual face-to-face interviews (Polit & Beck, 2018). This was chosen out of consideration for the participants who would be sharing personal information on a potentially sensitive topic. Data were analysed by systematic text condensation (Malterud, 2012). The COREQ, 32-item checklist is used in reporting the study (Tong, Craig, & Sainsbury, 2007).

| Participant selection and recruitment
Purposive sampling (Polit & Beck, 2018) was used and involved selecting participants who shared particular characteristics and had the potential to provide rich, relevant and diverse data pertinent to the research question. To be included in the study, the participants had to be over 18 years old and registered as a primary or secondary caregiver as their parent diagnosed with dementia was receiving healthcare services in the municipality. In addition, the parent should have moved to a nursing home for between 2 and 12 months prior to the interview. The reason for conducting retrospective interviews was that the last home-dwelling period-waiting for a place in the nursing home-could be especially stressful for both patients and their caregivers. Caregivers might find it difficult to express the positive elements of the caregiver role. Thus, by interviewing the caregivers at least 2 months or more after the parent has moved to a nursing home, the caregiver will have had the time to create some distance from the parents' home-dwelling period and be better able to reflect on the situation, add meaning to this experience and articulate it. The upper limit (12 months) was set so the participants could still remember their experiences with the caregiver role. Adult daughters and sons who met the inclusion criteria were identified and recruited by a project nurse working as a coordinator in the community. She was instructed to recruit both male and female caregivers. She telephoned 31 people. Five declined to participate, claiming that they did not have the time, energy or capacity to do so. Author HD called the participants who had agreed to be contacted by the researchers and of those five declined to participate for the same reasons. In sum, ten people who were asked to participate declined. 21 persons consented to be interviewed and none withdrew from the study.

| Sample
The participants were 12 daughters and nine sons. Biological, adoptive-and foster children were given equal status. At the time of interest when the parent with dementia was still living at home, none of the participants had been sharing a household with the care recipient. 12 of the participants had parents living alone, and in nine cases, the parent with dementia had lived with her or his spouse. All caregivers were holding paid jobs in addition to being informal caregivers. Table 1 contains information on the participants.

| Interview setting
The interviews took place at times and places that were convenient for the participants, such as their workplace, their home or a meeting room at the university. A few of the interviews started with the participants seeming a bit nervous, but after a while, a trusting atmosphere was established where the participants were able to share their experiences and express their opinions. In each interview session, only the participant and the interviewer were present and the participants seemed willing to speak openly. Note: Table 1 shows the variation in caregivers' age, gender, education, job status and the parents' household status.

| Data collection
A semi-structured interview guide (Polit & Beck, 2018) with openended questions was informed by previous research, the self-determination theory and through discussions in the research group.
The interview guide was tested on a daughter who met the inclusion criteria and she contributed to the interview guide and the interview itself. For example, she found it hard to answer the vague question of why she had put so much effort in helping her father. She recommended breaking the question into smaller themes to encouraging participants to start talking about their motivation. She requested a more precise question about her relationship to her father before and after the dementia diagnosis; her knowledge of dementia and of her father's symptoms; and the importance of being able to decide for herself what she should and should not do as a caregiver. Her feedback led to a more detailed and expanded interview guide [see Appendix S1]. This pilot interview contributed with rich data and was therefore included in the sample.
Data were obtained from individual face-to-face interviews (Polit & Beck, 2018) conducted by HD in 2017. HD is an experienced nurse trained in interviewing and consulting elderly patients and their caregivers. All participants were informed that she was a PhD student writing her PhD thesis on caregivers. The interviewer was unknown to all the participants except for the pilot interview; that participant was an acquaintance. The same interview guide was used in all interviews except for the pilot interview. All participants were interviewed once and each interview lasted from 56 min to 1 hr and 47 min; the median length was 1 hr and 11 min. The data material was digitally audio-recorded and later transcribed, mainly by HD. A professional transcriptionist was hired to transcribe parts of the last seven interviews. The transcripts were not returned to participants for comments as their intuitive experiences were considered essential for the research question. Permitting elaboration and corrections could have resulted in a data set that did not represent spontaneous answers to the interview questions.
The recruitment process lasted for several months. The participants were interviewed until no new relevant knowledge was generated (i.e. after 21 interviews). The research group discussed the point of data saturation (Polit & Beck, 2018). A bias in retrospective interviews might be that some participants easily could switch from the past to the present time and talk about the parent in the nursing home. Therefore, there was a risk of obtaining irrelevant information. This was handled in the interview situation by asking the participants to recall examples from the home-dwelling period.
Data on caregiving after the parent had moved to a nursing home were excluded from the analysis because it was not relevant to the research question.

| Analysis
Systematic text condensation, a four-step method for thematic analysis of qualitative data (Malterud, 2012(Malterud, , 2017, was adopted because we wanted to explore the sustained motivation across caregivers. The three first phases of analysis had an open approach. Once the themes, code groups and subgroups were identified and described, the SDT framework was an aid when categorizing subgroups and finding category headings in the fourth step. In this way, the analysis was data-driven, but the SDT helped to weave the grouped data into meaningful categories. This deductive approach of placing subgroups together in the fourth step may risk the exclusion of relevant data (Overgaard & Bovin, 2014). This issue has been ad-

| Ethics
The PhD thesis of which this study forms a part has been ap- were also reminded that they could stop the interview or withdraw from the study at any time without stating any reason.

| RE SULTS
All 21 of the adult-child caregivers willingly told their caregiver story, reflecting on the reasons for helping their mother or father. In the following, we describe the findings of our analysis according to the three main categories of competence, autonomy and relatedness with the associated subgroups (Table 2).

| Competence
Caregivers described their competence as the capability to master their daily life with the PWD. The competence of the adult children allowed them to experience different levels of control and predictability in their role as caregivers, thus affecting their motivation to remain in the caregiver role.

| The parent with dementia's needs
All caregivers experienced their parent gradually losing the ability to perform daily activities. The adult children were therefore in contact with their parents at least once a week and sometimes several times a day, trying assist their parents with activities of everyday life: It started with her not being able to pay her bills because she couldn't handle the internet anymore and she needed help to pay bills and sort out her finances. (Daughter, participant C).
The mastery of meeting the PWD's daily needs for support was an essential driver for motivation among adult children: "What's motivated me as a caregiver was that my mother should have the best

Competence
The parent with dementia's needs Thorough knowledge of the parent to identify what he/she needs. Different levels of coping and capacity in performing tasks for the mother/father and in meeting their needs.
Handling dementia Knowledge of the dementia illness and related professional help affects caregivers' feelings of mastery or helplessness in their role.

Autonomy
Freedom of choice The ability to choose when and how to help the parent.

Innate values and tasks
The naturalness of performing tasks to help the parent without thinking about why they do so, combined with a nuanced feeling of a sense of duty.

Relatedness
The parent with dementia The relationship with the parent before and after the dementia diagnosis and how well the adult child thrives with the parent.

| Handling dementia
Several of the adult children initially described a feeling of incompetence and helplessness when they did not know the reason for the decline in the parent's cognitive function and behaviour. At the same time, they were struggling to get access to professional help. Knowing how the healthcare system is organized and whom to contact in different situations was an advantage in caregivers gaining a sense of perceiving control, predictability and competence.
Competence in dementia and the healthcare system was obtained in different ways using various sources. Only a few caregivers had attended dementia information meetings or courses; others had consulted the internet or booklets on dementia. Common among care- givers was the helpfulness of information and advice from friends or colleagues whose own parents had had dementia: I often went hiking with a friend of mine.

| Autonomy
The adult children expressed the importance of the ability to choose when and how to help the parent as essential for their motivation in the caregiver role. At the same time, values and nuances of sense of duty were innate when describing tasks as natural.

| Innate values and tasks
It was challenging for caregivers to explicitly describe their motivation for taking care of their father or mother with dementia.
Everyone described it as a "natural" thing to do and "that is how we do it in our family, so the values are inherited". They had never thought of it as an alternative not to involve themselves in caregiving: Most of the caregivers seemed to have accepted these sentiments and they were not preoccupied with the thought of having acted out of a sense of duty or out of free will. In retrospect, it was more important to be able to look back on the home-dwelling period with the certainty of knowing they had chosen to do what they could to help their parent: "It felt like the right thing to do" (Son, participant P).

| Relatedness
The caregivers talked first and foremost about their relations with other people when describing their motivational drivers. Here, gaining positive energy from interacting with the parents and other persons was central to their motivation. A feeling of belonging being a respected part of a team was essential for remaining motivated as a caregiver.

| The parent with dementia
All caregivers talked about the relationship with the parent before they developed dementia. None of the adult children in this study indicated that they had previously had a markedly difficult relationship with that parent. Instead, they stated that they were genuinely fond of their parent and this made it easier to help them even with the less pleasant tasks: If your mother has been fond of you, then you are mo-

| The parent's spouse
Both parents of nine of 21 caregivers were alive and the parent with dementia had lived with his/her spouse. In most cases, these spouses had been in good health and had been the one taking on the major burden of daily caregiving with the support of the adult child.
These adult children pointed out the close relationship with the healthy parent as a key reason for their willingness to offer support: These caregivers wanted to support the healthy parent. They appreciated gratitude but did not necessarily expect it. Several gave examples of the healthy parent's appreciation of being able to share the responsibility: Mother was very positive and she is like that by nature. She also wrote a small booklet on 40 pages over the last two years where she talks about her experiences and her thoughts. She writes very positively, so it's her way of saying thank you for the period in which we contributed.

| Other persons
The responsibility for caregiving was often shared involving not only the adult child (and the PWDs spouses), but also other people in their social network like the caregiver's siblings, other relatives, the caregiver's spouse or grown children. Having respect, understanding and support from these other persons were important: I had a spouse with an extensive understanding of my situation. He was supportive and never accused me of not being at home and stuff like that. During times when I thought it was mentally difficult, he has been invaluable. I've been the only caregiver for my mother, but I've always had him as support.
(Daughter, participant T) Good relations with other caregivers gave a feeling of belonging, being trusted and meaning something to others. To experience themselves as an essential part of a team caring for the PWD was important to the caregivers. The caregiving also had positive outcomes, like bringing siblings closer: We are a family with mother, father and four siblings … We have been in a situation where the family has been central and we have been very focused on caring for each other and being friends. There are no conflicts. We have spent a lot of time reflecting on how this has changed us and what has changed. We siblings have actually become even closer. We talk about other things and feelings more than we did before.
(Daughter, participant S) The caregivers rarely mentioned their relations to healthcare professionals. If they did mention these professionals, the relationship was usually negative but with some exceptions. These professionals could have been a family doctor, a community nurse, a professional at the day care centre or a service coordinator. The caregivers expressed being treated with respect, acknowledgement, understanding and support.
A son mentioned that even though his father's health services were not always delivered as planned, he was satisfied with the long-term follow-up: We had telephone conversations on demand and she listened to me… She was, as I experienced her, genuinely concerned with trying to find alternatives and things that could help. So, she was very good indeed.

| The importance of telling the caregiver story
To prevent the exclusion of important finding when using a deductive approach (Malterud, 2012) in our fourth stage of analysis (see 3.7 Analysis), the transcribed material was searched for data that might fall outside the findings of the current analysis. In that respect, we found that caregivers were devoted to telling their caregiver history concentrating on practical issues, psychological stress, lack of support and respite services in their everyday assistance to their parent with dementia and how this also influenced their motivation negatively. Most caregivers had never had someone outside the family take an interest in them as caregivers. Therefore, they said it felt good to speak about what was important to them. In this analysis, these issues were not described in detail as they were outside the scope of the study. Relatedness to the person with dementia is a well-known factor for how caregivers experience their role (Bjørge et al., 2017;Bjørge, Saeteren, & Ulstein, 2019;Quinn et al., 2015). Relationship quality is directly linked to motivations for providing care and associated with the meaning of caregiving (Greenwood & Smith, 2019;Quinn et al., 2015). Essential in our study was the fact that adult children with two living parents were motivationally driven by the relationship with the healthy parent defining their role as supporting the primary caregiver. Greenwood and Smith (2019) found some similar caring motives described by spousal and adult children like, for example reciprocity, commitment, love, duty, loyalty, obligations and responsibility. On the other hand, previous empirical research has documented different experiences between caring for a parent or a spouse with dementia and between being a primary caregiver or a support for the primary caregiver (Conde-Sala et al., 2010;Tatangelo, McCabe, Macleod, & You, 2018). This is confirmed in our study from the perspective of adult-child caregivers.

| D ISCUSS I ON
The adult children in our study reported the importance of relationship quality with other persons (family members, friends, co-workers, healthcare professionals) where the essence was to be met with respect, understanding and acknowledgement, being listened to and supported. Consistent with self-determination theory (Ryan & Deci, 2017), this relatedness gave them a feeling of meaning something to others and being an important part of the team caring for the parent with dementia. Thus, satisfying the psychological need for relatedness allowed the caregivers to thrive and become more enthusiastic about caregiving (Pierce et al., 2001).
Our study also confirmed that positive and supportive relationships were important drivers for increasing adult-child caregivers' competence in assisting parents with dementia. Looking back on their parents' home-dwelling period, they expressed that whether they had become caregivers willingly or out of a sense of duty was not important to them. The most valuable motive for them was knowing they had done the right thing by keeping their parent comfortable at home for as long as possible. These findings differ from a main assumption of the SDT framework, where being autonomous and self-determined are premises for high-quality motivation (Ng et al., 2012;Ryan & Deci, 2017;Weinstein & Ryan, 2010). In work-related contexts, satisfying the needs for autonomy, competence and relatedness is valued as equally important (Williams et al., 2014), as is the case for the long-term caregiver context (Dombestein et al., 2019). In this study, dementia caregivers' needs for competence and autonomy were important, but not as important as relatedness. In other health contexts, use of self-determination theory has been well-tested with individual patients as the focus (Ng et al., 2012). Caregiving implies a relationship between the giver and the recipient of care. Reinforcing this, the adult-child caregiver and the parent with dementia are parts of a community relating and collaborating with family members, healthcare professionals and others.

| Methodological considerations
Limitations of the qualitative approach applied in this study should be noted. On the one hand, semi-structured questions provided in the interview guide may have influenced the final categories, in contrast to allowing the participants to speak freely about their experiences without any prompts. On the other hand, the phenomena motivation is an abstract concept and according to the pilot interview, it was hard to answer open questions like: "What made you help your mother/father with dementia when she/he was living at home?" The questions in the interview guide might also have led the participants to focus mostly on the positive aspects of caregiving, substantiating a possible exclusion of negative aspects and barriers to motivation. There is also a bias in using retrospective interviews as the data collection could obtain irrelevant information or miss vital information. We handled these issues by focusing on specific episodes from the parent with dementia's home-dwelling period and by excluding information not related to the home-dwelling period from the analysis.
Another limitation might be that since 10 of 31 potential participants declined for various reasons, we can discuss if our sample, in fact, was a convenience sample. According to Tong et al. (2007), this sample may have failed to capture important perspective from "difficult-to-reach" participants. Our results might have been different if these participants had been interviewed and we had the knowledge of their experience in the caregiver role.
The last issue was caused by ethical considerations. We were not allowed to collect data on recipients of care and therefore we had no information on, for example, the type of dementia they had. Adding this information to our study could have strengthened our findings and contributed to the elaboration of possible differences in motivation, for example, in being a caregiver to a parent with Alzheimer as opposed to a parent with frontal temporal dementia. Further research may explore these issues if ethical approval allows it.

| CON CLUS ION
In this study, we demonstrated that adult-child caregivers report relatedness as the key motivational driver for performing their caregiver role for home-dwelling parents with dementia. The knowl- adult-child caregivers including interventions to improve their relatedness, competence and autonomy. It could also be interesting to study the interconnection of the SDT core aspects in a dementia caregiver context as this has not been done before.

ACK N OWLED G EM ENTS
We thank the caregivers who generously shared their experiences with us. We also thank the local community project nurse who recruited participants for the study.

CO N FLI C T O F I NTE R E S T
The authors declare that they have no competing interests.

AUTH O R S ' CO NTR I B UTI O N S
Authors HD and AN contributed to the conception and design of the study. HD was responsible for recruitment, data collection, data analysis and drafting of the manuscript. AN and KA participated in four analysis workshops and contributed in the data analysis and interpretation of the data material. All authors critically revised the manuscript and have read and approved the final version of the manuscript.

LI N E PU B LI S H I N G
Interview guide.