Informal and formal care among persons with dementia immediately before nursing home admission

The number of people living with dementia worldwide was estimated as 35.6 million in 2010, and the numbers are expected to double over the next 20 years [1]. Strategies are needed to secure sufficient support for people living with dementia as well as their informal and professional caregivers without financially overstraining health and welfare systems. Health economic evaluations show that nursing home placement is the most significant factor driving costs in dementia care and that the interval from diagnosis to institutionalization is about 30–40 months [2‐5]. A considerable amount of informal care is provided in the patient’s home, and the burden of care is one of the main important factors associated with nursing home admission (NHA) [6‐11]. Several studies report that a considerable amount of informal care is provided in the home environment from 30 up to 100 h per week in their respective populations [7, 10, 12‐16]. Factors associated with increased informal care are dementia severity, severe neuropsychiatric symptoms, and increased functional impairment [7, 8, 12, 17‐19]. The influence of co-residency between the primary caregiver and the person with dementia is of particular interest. Previous studies have found associations between co-residency and increased informal care, while more formal care was associated with persons with dementia living alone [12, 15, 17, 20].

Expecting an increasing number of persons with dementia, The Norwegian Ministry of Health published the first national Dementia Strategy in 2007 to better meet the needs of patients, family caregivers, and the health care system. This strategy was updated in 2015. One of the main goals of the Norwegian Dementia Strategy 2020 [21] is to enhance the support to the family caregivers and better the cooperation with voluntary services to empower persons with dementia to participate more actively in society and to live longer in their own homes. A study performed in eight European countries found that informal care from family and friends, in addition to the primary caregiver, were available to less than half of the carers in the study and suggested that provision of informal support to the carer may act as a protective factor for the perceived carer burden [14]. However, knowledge about the extent of informal care in Norway delivered during the period before NHA, and the providers of informal care, not only including primary caregivers but also the extended social network, is scarce. Better insight to the extent of care provided in patients’ homes, who provides the care, and what factors are related to the amount of care in the period before NHA may assist the development of new services aiming to prolong time to nursing home admission.

The aim of this study was to assess the resource use in formal and informal care among persons with dementia during the last month before NHA, and to assess clinical and sociodemographic factors associated with the use of care. We aimed as well as to describe the main providers of informal care, and to assess the amount of informal care rendered by the extended social network.

This study assessed the use of formal and informal care among home-dwelling persons with dementia during the last month before permanent admission to a nursing home. For the two-thirds of the patients living alone, their closest caregiver was mainly one of their children, while for the patients living in co-residency, the caregiver was most frequently the spouse. Half of the sample received formal care in the form of home care services. The extent of informal care was substantially larger than the extent of formal care, and the majority of the informal care was delivered by the family caregiver, while the extended social network only contributed 3.8%. Half of the primary caregivers even reported to have no additional help at all, including the majority of spouses living with the patient. Only a small portion of 10% received care from two or more persons in their extended social network; however, the low hourly contribution suggests that the help was somewhat sporadic.

Care contributions from the extended social network have seldom been investigated or discussed in previous studies. In the US, The National Study of Caregiving found that 73–78% of caregivers to persons with dementia had additional helpers [27]. In Norway, the REDIC project found that 50 to 70% of caregivers had additional helpers, however, our findings show that the hourly contribution was low. We can only suggest possible reasons for the low contribution. Norway has high employment rates among both genders, possibly reducing the opportunity to support relatives [28]. Another explanation could be the increasing urbanization causing longer geographical distance between relatives [29]. The massive expansion of the public care services during the last 50 years might also lead to a perception that the provision of care to elderly relatives is a state- rather than a family-responsibility [30]. As more then 95% of all informal care was rendered by the main caregiver, there seems to exist unexhausted resources in involving the extended social network in order to relief the burden experienced by primary caregivers. However, the research community has yet to explore how to access these resources and the barriers that might exist in both rendering care but as well accepting it.

We found that the family caregiver provided a mean of 142 h per month of informal care. In contrast, a health economic analysis performed on several cohorts of persons with dementia concluded that a mean of 60 to 85 h per months of informal help were rendered at the point of diagnosis, thus, indicating a considerable increase in the need for care in the period leading up to NHA [31]. A previous study conducted in eight European countries with a cohort similar to the REDIC cohort reported 360 h of informal care per month, while studies observing cohorts with younger patients in earlier stages of dementia reported a range of 82 to 160 h per month [12, 14‐16]. These differences might be owed to varying shares of co-residing family caregivers. In addition, cultural differences regarding the experienced obligation to care for elder family members as well as the accessibility and costs of formal care might impact the extent of informal care.

Co-residency was a main predictor for the extent of informal care rendered. This might be an indication of “supply creates its own demand”, as co-resident caregivers (the spouse in most cases) might be more involved than needed when assisting the patients with daily tasks and supervision [32]. It could as well lead to an overestimation of care time, as it might be difficult to distinguish shared household activities from care activities. On the other hand, more severe dementia was associated with more informal care, suggesting that the amount of informal care is adjusted to the severity of dementia.

Only about half of the sample received formal care and our finding of 4.5 h of formal care per week is considerably lower than the findings in a comparable study that reported 7.5 h [15]. Another analysis of care resources to Norwegian home-dwelling persons with and without dementia found that 3.2 h of formal care was provided to a sub-population with dementia [31]. Thus, indicating a progressive increase in formal care provision. In recent years Norwegian Dementia Strategies have asked for more differentiated care services and a more individualized approach toward persons with dementia and their family caregivers. Consequently, we would expect a higher amount of informal care time and dementia-specific clinical measures to be associated with the extent of formal care, but we found that only somatic health was related to it. A possible explanation could be that Norwegian home care services mainly cover help with tasks related to ADL dependencies and, to a lesser degree, with tasks related to IADL dependencies and supervision of the patients [33].

Our finding that co-resident patients received less formal care and more informal care than patients living alone is consistent with previous studies [12, 15‐17]. It indicates a substitutive rather than complimentary relationship between formal and informal care use and are in line with a recently published study in six Western-European countries [34]. This might as well apply to the contributions from the extended social network as more support was provided from the extended social network in cases with non-co-residency and when the primary carer was holding a job.

The low use of formal care substituted by a high use of informal care might be due to a lack of perceived capacity or skill in the primary care services to offer specialized and individualized dementia care, especially care and support directed towards co-resident caregivers. A cross-European study found that the formal services available to persons with dementia were non-specific and not tailored to the patient group or the specific individual’s needs [35]. Other identified barriers to the use of formal care are that the family caregivers do not consider the need for the care, them or the patient having negative attitudes and beliefs towards formal care, low awareness of services available, poor accessibility to services, or high costs [36‐38]. Another possible barrier to formal care derives from a Canadian study were case managers seemed to purposely exhaust family resources before making formal home care services available [39]. Increasing the number of recipients of formal care or increasing the hours of care delivered to the respective recipients might contribute to relief the burden of primary caregivers and thus to delay NHA [5, 40].

We found that persons with dementia on the verge of admission to a nursing home are mostly supported by informal care provided by one primary carer, while the amount of care provided by the patients’ extended social network and the provision of formal care was low. Future research should explore the unrealized care potential in the extended social networks and the possibilities in more diverse formal care services directed to persons with dementia and their caregivers.