Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

Abstract Background Dementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs. Objective To identify important components of in‐home care for persons with dementia and their informal caregivers in the Netherlands. Design Semi‐structured interviews across the Netherlands, between March and June 2019 using thematic analysis. Setting and participants Persons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi‐structured interviews findings. Results Five themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers. Conclusion This study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.

another UK study by Kampanellou et al 10 that investigated the care preferences of informal caregivers of people with later-stage dementia demonstrated that respite care and daily living assistance were the most preferred attributes for the informal caregivers of people with later-stage dementia. However, as the Dutch health-care system differs from the health-care system in the UK, it is unclear if these findings are applicable to the Dutch dementia population.
In this study, we used semi-structured interviews and had an in-depth discussion with an expert, to identify important components of in-home care for persons with dementia and their informal caregivers in the Netherlands. By including not only informal caregivers, but also persons with dementia, unique insights about their preferences and needs can be obtained. These findings can be used to build dementia care packages for the improvement of dementia care, enabling persons with dementia to stay at home for as long as possible and to avoid crisis situations such as unplanned hospitalizations or nursing home admissions.
Additionally, including persons with dementia and informal caregivers in research and the development of care packages is an important component of patient-centred care and will help patient empowerment.

| Study design
This qualitative study was conducted between March and June 2019 across the Netherlands. In the first phase of the study, semi-structured interviews were held with persons with dementia and informal caregivers. Afterwards, there was an in-depth discussion with a case manager to reflect on the findings. All interviews were held in Dutch. Based on the study protocol, the Ethics Committee (METC) of the Amsterdam University Medical Center waived the obligation for the study to undergo formal ethical approval as described in the Medical Research in Humans Act, with the reference number: W19_126#19.159. Written informed consent was obtained from the participants prior to all interviews.

| Study participants
Persons with dementia and informal caregivers were approached.
Several organizations assisted with recruitment, including Odense Huis (daycare for persons with dementia) and Alzheimer Nederland (Dutch Alzheimer Association). Participants were recruited from rural as well as urban areas in the Netherlands. Participants were contacted via telephone or email to provide further explanation about the study and to confirm their willingness to participate.
Exclusion criteria consisted of (a) people who were cognitively impaired to the extent that no conversation could be held with them; (b) people who did not provide informed consent; and (c) people who were unable to speak Dutch or English. In total, 13 interviews were K E Y W O R D S accessibility of health services, dementia, health-care economics and organizations, homecare service, informal care, patient preference, qualitative research held, including five people with dementia and 14 informal caregivers. Four persons with dementia were interviewed together with their informal caregivers and in two interviews informal caregivers were interviewed simultaneously. The remaining participants were interviewed separately. Following these interviews, saturation was reached as no new themes or codes emerged from the data. Finally, a case manager was recruited to reflect upon the research findings of study phase one.

| Data collection
All interviews were conducted at the participants' homes. The interview guide consisted of broad questions about the in-home care to identify the most important factors for the participants. Additionally, more detailed questions were included focused on the findings of previous research focusing on unmet needs of informal caregivers and persons with dementia. 9,10 Detailed information about the interview guide can be found in Table 1. The interview guide was improved through several rounds of feedback among the research team. During the interview process, the interview guide was iteratively reviewed and revised when new topics were introduced. All interviews were audio-recorded, transcribed verbatim and translated from Dutch into English by the research team. The interviews lasted between 22 and 93 minutes.

| Data analysis
To analyse and identify relevant patterns in the data set, thematic analysis was performed in which codes and themes were derived from the data. 11 Thematic analysis is useful when aiming to derive meaning from a data set, taking both an inductive and a deductive approach. That is, the data are analysed starting from certain (theoretically or empirically driven) assumptions, and with an open approach. The interviews were analysed and coded independently by multiple researchers (JMV, JW and IV). Subsequently, findings were compared and discussed, and a coding scheme was developed iteratively. MAXQDA 11 12 was used for data analysis. Table 2 presents an overview of the participants' characteristics.

| Participant characteristics
In total, 20 participants were included: five persons with dementia, 14 informal caregivers and one case manager. The five key themes concerning participants' care preferences and needs that emerged from the data consisted of: (a) importance of the social network, (b) importance of formal care, (3) need for information, (d) need for emotional support and (e) need for easier access to care. These will be discussed in detail below.

| Importance of the social network
Informal care provided through the social network of the persons with dementia played an important role in the lives of persons with dementia and their ability to live at home. Informal caregivers helped the persons with dementia with a wide variety of tasks such as grocery shopping, finances or going to doctors' appointments. These were often tasks that fell outside the scope of the formal caregivers, who were not allowed to help with these sorts of activities.
However, as the interviewed case manager emphasized, especially for persons with dementia, it is important that there is more time to help with other sorts of daily activities.

| Importance of formal care
In addition to the satisfaction with informal care, most persons with dementia indicated that they were also pleased with the formal care provided. Both informal caregivers and persons with dementia indicated they had a lot of services available to them that they considered to be valuable and helpful to help stay at home for as long as possible. These valued services were as follows: the daycare facility, where people with dementia participated in various activities and came in contact with other people; help with daily activities, which Other persons with dementia and informal caregivers described their case manager as less involved and concerned with their situation.
They explained that the case manager did not help them sufficiently in the arrangement of care or search for information. Some informal caregivers also indicated that they were not always sure what their case manager was supposed to help them with and that they found it hard to know if they were asking the right questions.
[About the case manager] She was a nice person but, well, she was of no use to us. Things that we asked her to help us with, well she said she would like to help but in reality, it never got done. At some point it just kind of stopped.
participant 3 (person with dementia) These differences in satisfaction with case management were acknowledged by the case manager interviewed in this study.
Additionally, the case manager indicated that there might be regional differences in case management. He explained that dementia care is operated regionally and that in some regional chains, things are organized better than in others. Additionally, the case manager indicated that there are differences among health insurers regarding the importance given to dementia care and the money available for dementia care. This means that in some regions, people are offered more hours of case management than the people in other regions.

| Need for information
Even though some participants received useful and desired information from their case manager, all informal caregivers emphasized that a lot of questions were raised by the dementia diagnosis and the pro-

| Need for emotional support
In addition to the need for information, many participants indicated a need for emotional support. Especially the informal caregivers indicated that taking care of the person with dementia was emotionally trying and that they often felt the need to express their worries or feelings. Some informal caregivers found this emotional support in support groups with other informal caregivers. These groups gave them a space to talk about the things that they were going through.
Additionally, the informal caregivers mentioned that they learned from the other informal caregivers as they discussed common issues and their solutions or coping strategies to these issues. These support groups were often offered by the daycare facilities or case

| Need for easier access to care
The persons with dementia and informal caregivers also experienced difficulties with access to care. First, it is important to note that if people are unaware of the care services available to them, this means they will not be able to access these care services. Furthermore, both persons with dementia and informal caregivers expressed that they found the dementia care system complicated and fragmented. For example, how care was delivered and reimbursed by different institutions or legal acts was confusing to people. Some persons with dementia and informal caregivers who reported these difficulties with the access to care did not have a case manager or were dissatisfied with their case manager. They explained that they had to arrange care themselves, which they found complicated and time-consuming. The participants indicated that it was hard to get on overview of where they needed to be or who they needed to contact for which services or form of support.
In the end, you have to look into it yourself, and yes then you get telephone numbers and addresses and you have to get started with that. Well, yes you need to have a lot to offer in order to get that done. Cause I can imagine that many people do not know where they need to search for these things. That they are overwhelmed.

participant 7, (informal caregiver)
The Dutch legal framework for long-term care posed an additional problem for the accessibility of care for people with dementia living at home. These problems were caused by the Long-term Care Act (WLZ).
The case manager in this study explained that when a person with dementia wants to be on the waiting list for a long-term care facility, they need to apply for a long-term care indication. When a long-term care indication is there, the indication for the Social Support Act (WMO) ends and care will no longer be financed through the WMO. This means that all care received by the persons living at home, waiting to be placed in a long-term care facility, will be financed through the WLZ. However, the budget of the WLZ is exponentially lower than the budget from the WMO and the Health Insurance act (ZVW), which means that either less care can be offered, or people need to start paying more out of

| Key findings
This study shows that Dutch persons with dementia as well as their informal caregivers are generally pleased with the formal and informal care that they received. This is consistent with a previous study in which Dutch informal caregivers had a positive judgement of the professional dementia care and support, throughout different regions in the Netherlands. 13 Both persons with dementia and informal caregivers in this study commonly used and valued services such as the daycare facilities, help with daily activities from homecare organizations and adaptations in the home to increase safety.
Additionally, the participants in this study, especially the informal caregivers, indicated to have a need for emotional support and information. Even though some informal caregivers reported that they found and appreciated certain forms of emotional support, other informal caregivers reported to have unfulfilled support and information needs and were often unaware of the services available to them.
This need for information and emotional support, especially for the informal caregivers, has been identified in previous Dutch studies. 14,15 Additionally, a previous UK study by Chester et al 9 found that the most preferred home support options for caretakers of people with early-stage dementia included 'support with personal feelings and concerns -provided by a trained counselor at home' and 'information on coping with dementia -provided by an experienced worker at home'.
Furthermore, a study of Kampanellou et al 10 indicated that for the informal caregivers of people with later-stage dementia, respite care was the most preferred attribute for in-home support. The informal caregivers in this study did not talk about a need for respite care. However, almost all participants explained that the person with dementia went to a daycare facility several times a week. For the informal caregiver, this meant that they were temporarily released from their caregiving tasks, which could therefore be seen as a form of respite care.
Furthermore, this study shows that both persons with dementia and informal caregivers deem dementia care complex and express the need for guidance and help with the access to care. Some participants found this help and guidance in their case manager, whereas others were very dissatisfied with their case manager. These differences in satisfaction might be related to the fact that financing of dementia care is dependent on the policy of the municipalities, which puts the continuity of case management at risk. 16

| Strengths and limitations
To the best of our knowledge, this study is the first interview study

CO N FLI C T O F I NTE R E S T
There was no conflict of interest for any of the authors involved in this article.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.