Rotational care practices in minority ethnic families managing dementia: A qualitative study

Introduction

In Denmark, approximately two-thirds of people with dementia are supported in the community, and family carers are the primary source of dementia care (Danish Dementia Research Center, 2018). This is especially true among minority ethnic populations, who are less likely to access public dementia care services (Nielsen et al., 2019; Stevnsborg et al., 2016). Turkish, Pakistani, and Arabic speaking populations represent some of the largest minority ethnic populations in Denmark, and knowledge about dementia care in these communities remain limited.

Most research on dementia care in minority ethnic groups has been conducted in the United States and has mainly focused on Asian, Hispanic, and African American populations (Cooper et al., 2010; Daker-White et al., 2002; Dilworth-Anderson & Gibson, 2002; Janevic & Connell, 2001). In Europe, this line of research is generally a more recent phenomenon and has primarily adopted a service perspective focusing on issues of access and suitability of health and social services, including the attitudes, experiences, and needs of family carers of people with dementia in minority ethnic communities (Baghirathan et al., 2018; Berdai Chaouni & De Donder, 2018; Denktas et al., 2009; Hossain et al., 2018; Johl et al., 2016; Kenning et al., 2017; Mukadam et al., 2011; Nielsen & Waldemar, 2016; Næss & Moen, 2015; Parveen et al., 2017; Sagbakken, Spilker, & Ingebretsen, 2018). Significant variation between minority ethnic communities has been described regarding the motivation to adopt the carer role, the willingness to care, the experience of being a carer, and the use of external support (Parveen et al., 2011). However, generally the literature point at lower service use and higher reliance on family care in Turkish, Pakistani, and Arabic speaking minority ethnic groups compared to European majority ethnic groups.

Despite the growing literature on barriers in access to care and the evidence for a lower uptake of dementia care services, there is very little research exploring how minority ethnic carers cope with and manage dementia care in their everyday lives. Rather than involving formal care services, some studies indicate that minority ethnic families may be more likely to adopt family care patterns in which several family members share the responsibility between them (Boughtwood et al., 2011; Lawrence et al., 2008; Sagbakken, Spilker, & Ingebretsen, 2018). However, little attention has been paid to the organization of these care practices, why they emerge, or the consequences they have for family carers and the person with dementia.

The aim of this study was to investigate organization of family dementia care in Turkish, Pakistani, and Arabic speaking minority ethnic families from the perspective of family carers, primary care dementia coordinators, and multicultural link workers in Denmark.

Setting

In Denmark, free access to medical and social care is available for all legal residents, including in-home services (personal care, homemaking, home nurse, etc.), elderly daycare, and nursing homes. However, there are no public or private dementia services catering to specific minority ethnic groups. As in other western European countries, Turkish, Pakistani, and Arabic speaking migrants form some of the largest minority ethnic groups in Denmark. Out of a total population of 5.8 million people, approximately 9% is of non-Western origin, including about 64,000 people of Turkish, 26,000 of Pakistani, and 150,000 of Arabic speaking origin (www.statistikbanken.dk). Older Turkish and Pakistani immigrant men generally came to Denmark as working migrants in the 1960s and 1970s due to a demand for manual labor and later settled permanently with their wife’s and children through family reunification programs. Older Arabic speaking immigrants came both as working migrants in the same period or as refugees in the 1980s, mainly from countries in the Middle East and North Africa. Despite having lived in Denmark for many years, Danish language proficiency is generally limited among older Turkish, Pakistani, and Arabic speaking immigrants and many have little or no education, especially women. The majority in all immigrant populations are Muslim.

Methods

Results

Participants and demographics

A total of 21 individual and four group interviews were conducted, including a total of 30 participants. Of these, 26 (87%) were female. Family carers had provided care for a family member with Alzheimer’s disease for 3–15 years; two were spouses, nine children (or children-in-law), and one a grandchild. All people with dementia were first-generation immigrants to Denmark. Among family carers, two had primary education, three short-cycle tertiary education, four Bachelor or equivalent education, and two Master or equivalent education. Primary care dementia coordinators had supported 2–10 minority ethnic older people with dementia within the last year, while multicultural link workers had experience with 1–20 through their professional and personal networks. Demographic characteristics are presented in Table 1.

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Table 1.

Participants.

Characteristics	Family carers	Multicultural link workers	Dementia coordinators
n	12	11	7
Age (range)	38–70	30–67	42–64
Gender F/M (n)	8/4	11/0	7/0
Ethnicity (n)
Turkish	6	3	–
Pakistani	2	2	–
Arabic speaking	4	3	–
Danish	–	–	7
Other	–	3	–

n: number; F: female; M: male.

Themes

The results of the analysis revealed three main themes: (1) organization of family dementia care—rotational care practices; (2) motivation for family dementia care—good children take care of their parents in old age; and (3) consequences of family dementia care—social isolation and dislocation from the community. No patterns in the emergence of themes were found with regard to participant characteristics, and no themes or codes were exclusive to any particular participant category or ethnic group.

Discussion

This study is the first to consider in more detail the organization of family dementia care in Turkish, Pakistani, and Arabic speaking minority ethnic families in Denmark. As in previous studies in minority ethnic communities in Europe (Baghirathan et al., 2018; Berdai Chaouni & De Donder, 2018; Hossain et al., 2018; Næss & Moen, 2015; Parveen et al., 2017; Sagbakken, Spilker, & Ingebretsen, 2018; Sagbakken, Spilker, & Nielsen, 2018; van Wezel et al., 2016), we found a preference for keeping dementia care within the family with limited support from formal care services but more details about how this was managed by the families.

A key finding of the study was that in most families, several family members shared the care responsibility. Although different care models were identified, rotational 24-hour care—either by having the person with dementia live with different family members or by having different family members take turns to move in with the person with dementia—emerged as a common alternative to formal care. As in other research in Turkish, Pakistani, and Arabic speaking communities (Berdai Chaouni & De Donder, 2018; Hossain et al., 2018; van Wezel et al., 2016), it was evident that children of the person with dementia were central in these care arrangements. However, previous research has not focused on organization of shared family care, despite this care model has been considered when discussing dementia care in Turkish, Pakistani, and Arabic speaking minority ethnic communities (Boughtwood et al., 2011; Lawrence et al., 2008; Sagbakken, Spilker, & Ingebretsen, 2018). The current study illustrates that in some families, 24-hour rotational care of an older family member with moderate or severe dementia was organized between the children according to a more or less fixed schedule, while more ad hoc rotational care practices were also described that could even involve children living in another country. Several factors were found to influence on decisions made about dementia care. On one hand, rotational care practices emerged due to notions of religious duty and shared reciprocity (Nielsen et al., 2018), and on the other hand to alleviate or distribute the burden of care between adult child carers who often had to manage dementia care while juggling multiple other responsibilities related to paid work and childcare. Also, in line with reports from previous research (Baghirathan et al., 2018; Berdai Chaouni & De Donder, 2018; Hossain et al., 2018; van Wezel et al., 2016), many family carers considered formal dementia care culturally inappropriate and/or inadequate due to lacking cultural, language, and religious sensitivity and thus disengaged from mainstream services. As noted in other studies (Baghirathan et al., 2018; Shanley et al., 2012), families would often prefer options that provided them with the flexibility necessary to provide family care for the person with dementia at home (e.g. economic compensation of lost income for the family care provider) or having a home care provider who spoke their language. However, in Denmark, such options are generally not available. The rejection of formal care services further contributed to rotational care practices as these accommodated cultural expectations about children’s obligation to provide care for their parents in a generation brought up in a society and historical time in which women are expected to be part of the labor force. Although similar care models have been described in Spain and Malta (Innes et al., 2011; Rivera et al., 2009), such care arrangements are extremely rare in Denmark, where formal care is generally more accepted and available.

It is important to notice that the attitudes, beliefs, and behaviors of family carers were not uniform but varied within minority ethnic groups. In line with previous research (Boughtwood et al., 2011; Hossain et al., 2018; Rivera et al., 2009), primary care dementia coordinators and multicultural link workers found both socioeconomic status, education, and acculturation to influence decisions about care. Often, families struggled in trying to reconcile multiple values and commitments, such as financial considerations with family and cultural expectations. Adult children with more education were generally perceived to be more informed about and likely to use formal services, especially if the children had an education within health or social care. Another factor that was perceived to influence the attitude toward caregiving was religious beliefs. All family carers in the present study were Muslim, and as described in previous research (Johl et al., 2016), it was clear that holding strong religious values motivated and shaped family carers’ desire to provide care for a family member with dementia. Especially in the case of adult child carers, providing care was seen as the cultural norm and an opportunity to reciprocate parental love and support. Also, all people with dementia and most of the family carers in the present study were first-generation migrants to Denmark, and previous research has revealed that different migration experience, including the age at which the person migrated and the reason for migrating, influence their caring experience (Berdai Chaouni & De Donder, 2018; Johl et al., 2016).

Another important point made by the primary care dementia coordinators was that despite decreasing the burden of care of individual family carers, rotational care could be confusing and stressful to the person with dementia and would often have a negative impact on the quality of life of all involved. Although family carers in the present and previous research often highlight positive aspects of providing care for an older family member, such as feelings of satisfaction, because they are fulfilling their religious and cultural obligations, and the respect and appreciation they get within the family and from the community (Hossain et al., 2018; Parveen et al., 2011; van Wezel et al., 2016), it is also evident that the stress of family care could have a negative impact on family relationships as couples were often unable to spend time together and siblings got into conflicts (Boughtwood et al., 2011; Hossain et al., 2018). Importantly, with progressing dementia and increasing care demands, family carers and the person with dementia would often become increasingly socially isolated as it was difficult to remain involved in activities outside the home (Innes et al., 2011). As described in previous research, often family carers did not find members of the extended family or the minority ethnic community to be supportive (Boughtwood et al., 2011; Hossain et al., 2018; Parveen et al., 2017). These isolating mechanisms were most likely linked to a strong stigma associated with dementia in the minority ethnic communities, which has been found to interfere with the willingness of people with dementia and their families to participate in the community (Berdai Chaouni & De Donder, 2018; Hossain et al., 2018; Johl et al., 2016). In combination with the rejection of formal care services, this contributed to dementia care being dislocated from the community. This is a very important finding considering that caring for a person with dementia exerts huge psychological, physical, and emotional demands and impacts on all family members, including children (Hossain et al., 2018; Lawrence et al., 2008).

Our findings have implications for understanding support needs and for service planning. Currently, people may not access support and care services as they do not fit cultural norms and values about family care or support the adopted care model. Support programs for minority ethnic carers should also target the adult children and include strategies to manage competing values in decision-making and dealing with family disagreement in the context of dementia. As suggested by other researchers (Boughtwood et al., 2011), it is important that service providers are sensitive to different family structures and understand that, both between and within ethnic groups, people may hold different cultural values that will impact on decisions made about dementia care. Services might be considered more acceptable if they could communicate their commitment to respecting individual preferences for care, and to supporting, rather than substituting, family members in their caregiving role (Baghirathan et al., 2018; Lawrence et al., 2008).

Conclusion

This qualitative study provides novel knowledge about the organization of dementia care in Turkish, Pakistani, and Arabic speaking families from the perspective and experiences of family carers, primary care dementia coordinators, and multicultural link workers. Rotational 24-hour care practices in which the person with dementia lived with different family members or different family members took turns to move in with the person with dementia were identified as a common care model. This care practice emerged both due to notions of religious duty and shared reciprocity, and to alleviate or distribute the burden of care between adult child carers. A general lack of culturally and linguistically appropriate formal care solutions meant that involvement of formal care would often not be considered until all other options had been tried, especially in the case of nursing homes that would be strongly rejected by most family carers. Although rotational care practices with little or no support from formal care services were described to decrease the burden of care of individual family carers, progressing dementia and increasing care demands would often have a negative impact on the quality of life of all involved.

The study findings highlight that the attitude toward dementia care and the way care is organized by minority ethnic families have implications for understanding and communicating about support needs. Importantly, as noted by others (Sagbakken, Spilker, & Ingebretsen, 2018), lack of service use and higher reliance on shared family care should not be taken to indicate that minority ethnic communities are not in need of support from formal services. However, formal care services may not always be a culturally acceptable solution to the families. Dementia care policy needs to take this into account and consider innovative and pro-active strategies for supporting minority ethnic families in providing the best possible dementia care through appropriate training, support, and liaison. At the same time, more research is needed to explore the specific needs of people from minority ethnic groups with dementia and their family carers, and to develop culturally appropriate interventions to support the families.