Unmet support needs of early-onset dementia family caregivers: a mixed-design study

It has been well documented that the onset of dementia in persons 65 years old or over constitutes a particularly painful event for both the sufferers and their family caregivers. However, much less is known about the repercussions on the families of young persons with the disease [1],[2], even though advances in knowledge and diagnostics now allow identifying much sooner cases of early-onset dementia, that is, those involving persons under 65 years of age [3]. The fact that little research has been conducted on early-onset dementia has been attributed in part to the fact that dementia is associated with old age [4] and that it is difficult for young persons and their families, as well as for healthcare professionals, to envisage this disease occurring at a young age.

The most common types of early-onset dementia are Alzheimer’s disease, which is often associated with a genetic etiology, followed by frontotemporal degeneration [5]. However, what often sets these types of dementia apart from late-onset types is the saliency of behavioural, praxic, executive and language problems over memory loss [1],[6]. Moreover, the delay between the appearance of the first signs of dementia and diagnosis has been found to be longer for early-onset forms, particularly on account of lay representations that associate dementia with old age [7].

The context of early-onset dementia, too, is very particular. It is often characterized by spouses in their 50s, with children at home, and at the height of their working life [5]. Their marital life is upset by the advent of dementia at a time when such an occurrence is supposed to be highly unlikely [1]. The cognitive impairments of the sufferer and the person’s diminished ability to perform daily tasks lead to a growing dependence that forces people to redefine their spousal identity and relationship. Interpersonal relationships are necessarily restructured as the cared-for person becomes more and more dependent on family to meet his or her needs. This restructuring is extremely demanding the less reciprocal the relationships become [1],[8]. Moreover, the caregivers of younger sufferers report higher levels of burden and stress than do the caregivers of older sufferers [1],[9],[10]. Lastly, it has been reported [11] that couples often face financial difficulties stemming from loss or reduction of employment.

Among the very few studies to examine the lived experience of caregivers of younger sufferers, the one by Ducharme and colleagues [12] allowed documenting that the daily reality of spouse family caregivers was marked primarily by the following: long quest for diagnosis; denial of diagnosis and non-disclosure to others; difficulty managing behavioural and psychological symptoms; grief over loss of spouse, married life and midlife projects; difficulties associated with assuming caregiver role prematurely and juggling this with other roles; and difficulties planning for the future.

In light of the growth in diagnosed cases of Alzheimer’s or related dementias at an increasingly younger age, healthcare professionals, particularly nurses working in primary care or in cognition clinics, are more frequently in contact with families living with this situation. In this regard, it has been demonstrated that healthcare professionals know little about the support needs of this particular group of caregivers and, consequently, are at a loss how to help them and improve their quality of life [13]. These observations bring to the fore the necessity of documenting the support needs of these caregivers who, to our knowledge, have not been a specific focus of research to date. This is all the more important in that, according to the caregiving models developed by Pearlin, Mullan, Semple, and Skaff [14] and by Schulz and colleagues [15], informal and formal support could have a direct or a mediating effect on caregiver well-being.

Against this background, we undertook a study to document the unmet needs for support of early-onset dementia caregivers in the aim of opening avenues for the development of nursing interventions and professional services tailored to their needs.

The aim of this study was to document unmet support needs among early-onset dementia family caregivers. To this end, we used a mixed research design and a partnership approach. Results evidenced that these caregivers, who for the most part were spouses in their 50s often with children at home, have numerous needs for support.

As mentioned above, aside from the fourth dimension regarding quality of help received, 16 of the 30 needs investigated under the first three dimensions covered by the FCSA tool were unmet in 50% or more of the caregivers. Of these needs, six were particularly prevalent, as they encompassed 69% or more of the respondents. It is not surprising that two of these prominent needs (need for more information on available help and financial resources) arose in numerous caregivers given the large number of hours of care per week (84 on average) that the caregivers offered their sick relative and the fact that many of the caregivers had to quit their gainful employment or cut their hours of work. Two other needs that emerged from our analysis concerned the relative’s quality of life. In the face of the very nature of the disease, the caregivers observed that making their relatives feel valued as persons and providing them with a greater number of stimulating activities would contribute to their well-being. Preserving the abilities of these young people is essential to maintaining their self-esteem, dignity and sense of usefulness. Oftentimes, young persons are fine physically and could put their residual abilities to good use in the context of activities better adapted to their age.

Regarding quality of life, a large number of caregivers would have liked to reduce the stress related to their role and enjoy more time for leisure activities. The caregivers interviewed are young, have full family, social and professional lives and, to top things off, must assume a caregiver role at an early age and grieve the losses associated with this situation, including the sudden change in their marital life. From the viewpoint of the theoretical model of caregiving developed by Pearlin and colleagues [14], the experience of caregivers can be explained by the fact that they are exposed to multiple stressors. Some of these are part of their daily life, notably: relational deprivation (e.g., being less able to confide in his/her relative), family conflicts (e.g., disagreement between caregiver and family members about the cared-for person’s disability and its seriousness), and work-caregiving conflicts (e.g., dilemmas and pressure stemming from demands of caregiving and employment). Role captivity is another source of stress under Pearlin’s model. This arises when caregivers feel chained to their caregiving responsibilies in the face of activities they must forego. Also. given their caregiving experience, it is not surprising that, besides wishing to live with less stress and to have more time for social activities, caregivers would like, in particular, to receive more help with how to talk openly with family and other caregivers about their caregiving situation and how to set their limits as caregivers.

It is interesting to note that in addition to being numerous, the participants’ needs are primarily psycho-educational needs rather than instrumental needs. The dominance of these needs can be explained easily if we consider that early-onset dementia family caregivers experience difficulties above all of a psychological nature, as reported in an earlier study [12]. The primacy of psycho-educational needs reflects the comprehensiveness and complexity of the caregiver role. This role goes far beyond the instrumentality associated with accomplishing care tasks. These tasks constitute only the tangible aspect of the caregiver role. There are also other aspects of caregiving that are much less visible. These, commonly referred to as its intangible aspects [31], lie at the heart of a relational process involving the caregiver, the sufferer, and the family. Indeed, caregiving by its very essence takes place within a relational process that cannot be divorced from the relational history of these partners in care. The intangible aspects include, in particular, what caregivers do to maintain a satisfactory relationship with their spouse or partner and to cope with the difficult emotions they feel every day. From this perspective, it would be more appropriate to say that the caregiver role consists of taking care rather than providing care. It is important to underline that our study revealed a lack of support in connection with the intangible aspects of care.

The last dimension that we investigated among caregivers concerned quality of services. Our results showed that caregivers who received help in the course of their trajectory were generally grateful for the services received even though they were not always delivered in a timely fashion. This situation can be explained, in part, by the long delay in obtaining a diagnosis and by the difficulty finding available resources in general, but also resources tailored to the specific needs of this group of younger family caregivers who are on a different schedule and at times still hold a job. In short, it seems that, once a diagnosis is established, the wait time to receive help is inadequate. The participants pointed out also that the support offered is not specific to their condition as evidenced by the striking comment by one participant to the effect that support was more easily available for caregivers of older persons than for those of persons in their 50s.

The results demonstrate, also, the relevance of assessing unmet needs for support in partnership with caregivers. Indeed, the caregivers expressed, within the context of our assessment, the wish that help be offered following discussions with service providers. These young caregivers belong to a generation in which most know that they have the right to take part in the decisions concerning the care and services that they should have access to. A partnership approach allows them to be heard, to feel empowered by obtaining recognition of the abilities they acquire day by day providing care, and to be considered co-experts capable of taking an active part in the assessment of their needs. According to a study conducted by Raivio and colleagues [32], nearly 69% of the dementia family caregivers in their study reported having no say in the services that they were offered, a result supporting the importance for their voices to be heard. The use of an instrument such as the FCSA tool, which is based on a partnership approach, proved fruitful if not indispensable for documenting the support needs of caregivers accurately and for gaining a better understanding of what it means to be an early-onset dementia caregiver.

Further, although this study was undertaken with a small number of participants, the fact remains that data saturation was achieved. What’s more, the observations made can already orient healthcare professionals, especially nurses, in their role with these caregivers of young dementia sufferers. In the present context where the primary determinant of the healthcare services available and offered is the state of health of the sufferer [33], it is essential that the needs of caregivers also be taken into account so that services target not only persons with a disease but also the caregiver-care-recipient dyad.

Like all other healthcare professionals, nurses have to be alert to the possibility that a young person can suffer from dementia and that such an event can constitute a crisis situation affecting the entire family system. Needless to say that one of the first measures to consider is suggesting to caregivers that they seek a physician’s diagnosis sooner rather than attributing a relative’s early signs and symptoms of disturbed behaviour to burnout or depression. This will avoid an overly long delay in obtaining a diagnosis of early-onset dementia.

Once a diagnosis is established, primary-care nurses have a key role to play in the systematic assessment of the support needs of this group of caregivers, a process that can contribute to reduce their uncertainty and, as mentioned earlier, their feeling of powerlessness [12]. In this regard, the FCSA is a tool with application potential in clinical practice, as the mutual agreement that underpins the instrument improves the chances of achieving a better fit between needs and support offered [15],[34].

Also, despite the scarcity of resources for these family caregivers of young persons, it is imperative that they be made aware of those that exist and are available to them, such as respite services, daycare centres, Alzheimer Society services, and support groups. Though these younger caregivers generally have the capacity to seek the information that they need on the web, facilitating their access to this information or filtering it could be helpful in light of their busy schedules and the knowledge that they sometimes lack to be able to assess the quality of this information, particularly when it is of the medical sort.

Above all, innovative forms of support designed specifically for young-onset dementia caregivers are needed. In this regard, some interventions have been proposed in the literature in recent years that could allow meeting several of the needs identified in this study. These include assigning a nurse case manager to assess specific caregiver support needs at time of diagnostic disclosure and to ensure follow-up of the caregiver-care-recipient dyad across their care trajectory [35]. Also, opening a clinical file for caregivers would allow considering them as clients of healthcare services and recognizing the health risks associated with their role [13]. Moreover, various modalities (i.e., at home, by telephone, or online) of psycho-educational interventions to reduce stress [36] have been put forth, as have systemic family interventions [37]. New forms of respite, too, have been suggested to meet the needs of caregivers in the workforce who often still have children at home [36]. However, “real respite” and time allocated specifically to caregivers are just as essential for preserving their psychological and social health. In addition, daycare centres should be redesigned to offer stimulating activities in line with the residual abilities of young sufferers [13]. Given the possibility of diagnosing dementia sooner nowadays, emphasis should be placed on stimulating persons diagnosed with the disease. In light of how the illness evolves, it is important, also, to ensure a smooth transition in the services offered these persons and their caregivers. Young people could take part in support groups specifically designed for them in the early stages of the illness. Support groups could also be organized for caregivers of like age going through similar situations.

This study revealed that many early-onset dementia caregivers had unmet support needs and required psycho-educational interventions to help them cope with the intangible aspects of their caregiver role, particularly changes in their marital, family and professional lives. Aside from wanting to be heard, these caregivers underscored the importance of receiving support in a timely fashion, taking account of their specific needs across their singular, less documented trajectory. In sum, as actors of their own reality wanting to take part in the decisions concerning them, the caregivers clearly recommended avoiding the “one-size-fits-all” approach to intervention and instead developing interventions tailored to their needs. Members of interprofessional teams who work with these family caregivers would stand to benefit from hearing them out knowing that in the absence of such a fit, caregivers are likely to perceive services as irrelevant and either reject them or accept them reluctantly and thus dampen their potential benefits [17].