Abstract
Background
Research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers. The purpose of this study was to identify what types of information family caregivers of persons living with dementia in nursing homes would deem useful in preparing them for their relative’s end-of-life and assist them to make decisions about care along the dementia trajectory.
Methods
The qualitative methodology of interpretive description was used to guide the study in which semi-structured interviews were conducted with nursing home staff in clinical roles (e.g., nurses, health care aides, social workers, speech language pathologists; N = 26), palliative care clinicians (N = 7), and bereaved family caregivers of persons with dementia (N = 17). Data were analyzed using thematic analysis.
Findings
Eight substantive categories essential to meeting family members’ needs for information and preparing them for the future were identified including: (i) dementia in general, (ii) dementia toward the end-of-life, (iii) care of persons dying with dementia, (iv) the role of family caregiver as decision maker, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a NH.
Conclusion
Our findings suggest that family caregivers of nursing home residents with dementia have unique information and support needs, some disease specific, others more related to life in a nursing home in general. Health care providers need to support and encourage dementia literacy for family caregivers. A key strategy is to proactively broach these topic areas, as too often family caregivers may not recognize or value their need for information.
Introduction
For people living with dementia, progression of their illness and associated increased care needs may necessitate their admission to a long-term care facility such as a nursing home. Up to 90% of patients with end-stage dementia can be expected to receive care in a nursing home (Givens et al., 2009), and in many countries, such facilities are the most common location of death (Pivodic et al., 2018). Excellence in care of those with life-limiting illnesses, such as dementia, is based on current best evidence but also incorporates and responds to the needs and expectations of the person living with dementia and their family caregivers. Understanding these needs and managing expectations requires open and ongoing dialogue about the trajectory of illness and what to expect as a person with dementia moves closer toward death. However, research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers (Chang et al., 2010). Studies consistently indicate that family caregivers of persons with dementia often fail to understand the clinical trajectory of dementia, leading to feelings of uncertainty, a lack of preparedness for decision-making near the end-of-life, and difficulties anticipating what the future may hold (Givens et al., 2009; Hovland-Scafe et al., 2017; Parker et al., 2007; Pashby et al., 2009).
When caregivers of persons with dementia lack the required knowledge regarding the dementia trajectory, they may construct their own personal interpretations of the illness (Davies et al., 2017; van der Steen et al., 2013), which has ensuing effects on their well-being. Specifically, having unmet information needs results in many caregivers feeling unprepared for enacting a decisional role and ultimately the death of their family member. Previous findings indicate that between 20% and 25% of bereaved dementia caregivers felt unprepared for the death of their friend or family member (Hebert et al., 2006), which may contribute to psychological distress. Higher levels of complicated grief, depressive, and anxiety symptoms before the death and up to 18 months bereavement have been reported in this population (Chan et al., 2013).
In order to support family caregivers of persons with dementia, health care providers need to first understand what types of information caregivers would deem useful in order to make decisions about their family member’s care along the dementia trajectory. Health care providers, through their clinical practice, may have an implicit understanding of some of the information family caregivers would find helpful but also rely on caregivers themselves posing questions to elicit information. However, often times, family caregivers report not knowing the questions to ask or are too afraid to questions for fear of appearing unknowledgeable or not wanting to “bother” busy health care providers (Caron et al., 2005; Hertzberg et al., 2001; Marziali et al., 2006). The purpose of this study was to explore the information and support needs of family caregivers from the perspectives of bereaved family caregivers and health care providers, regarding the prognosis, clinical course, and palliative care of nursing home residents with advancing dementia.
Methods
Interpretive description, a qualitative research methodology that places emphasis on yielding knowledge for application in clinical practice, was used to address the aims of the study (Thorne, 2008; Thorne et al., 1997). Consistent with this approach, semi-structured interviews were conducted with nursing home staff in clinical roles (e.g., registered nurses, health care aides, social workers, speech language pathologists), palliative care clinicians, and bereaved family caregivers of persons with dementia, to describe the information deemed essential for family caregivers to comprehend regarding the trajectory of dementia. Ethical approval for this study was obtained from the institutional review board of the University of Manitoba, and approval for access was obtained from the nursing home sites used for recruitment of participants. These sites (n = 4), all from a large urban center in Central Canada, were approached to aide in recruitment based on their diversity in size (range: 91–277 beds), proprietary status (2 for-profit and 2 non-profit), and populations they served (e.g., dedicated dementia care units, low-income).
Sample and recruitment
The sample recruited for this study consisted of health care providers working in the study nursing homes, palliative care physicians, and clinical nurse specialists who provided consultation services to those study sites, and bereaved family caregivers of persons with dementia who had received care in and died within the last year in those nursing homes.
A purposeful sampling strategy was used to recruit study participants. Eligibility criteria for NH care providers included being currently involved in the delivery of direct care to nursing home residents, able to communicate in English, and willing to participate in an interview. To recruit nursing home care providers, the study principal investigator (GT) and research assistant visited each site to describe the purpose of the study and the nature of participation in it. Recruitment posters and flyers were also distributed at each facility explaining how those interested in taking part in the project could contact the researchers.
Palliative care experts (physicians and clinical nurse specialists) providing consultation services to nursing home residents with dementia in this urban area and willing to be interviewed were eligible to take part. A general email invitation was sent out on behalf of the research team from the regional health authority palliative care program director, regarding the study and how to contact the research assistant if a clinician was interested in participating.
Because of their experience in being a family caregiver of a person with dementia in a nursing home and the important perspective that experience afforded them, a sample of bereaved family members whose relative had died with dementia in one of the study sites were also recruited. Inclusion criteria for bereft family members included having had a friend or relative with dementia die in the study site in previous 12 months, having visited the resident more than once in the last month of life, being at least 18 years of age or older, able to understand and speak English. The administrator at each study site identified bereft family members meeting inclusion criteria and mailed a letter of invitation to participate in the research study on behalf of the researchers.
Eligibility criteria were reviewed and confirmed with all participants who contacted the research assistant to participate in the study, and a date, time, and mutually convenient location were determined to conduct an interview.
Measures
Semi-structured, individual face-to-face interviews were conducted by an experienced research assistant hired for this study between February and October 2013. Prior to each interview, the purpose of the study was reviewed and written informed consent obtained. Each participant group was asked a similar set of questions. Nursing home care providers and palliative care clinicians were asked to reflect on (i) the information they felt was the most important to convey to family caregivers regarding the care of residents with dementia nearing the end-of-life, (ii) common questions asked by family caregivers about the end-of-life, and (iii) questions they felt would elicit useful information but that family caregivers had difficulty asking, or might not consider asking. For bereaved family caregivers, the interviews focused on exploring questions caregivers believed were important to discuss with health care providers in order to prepare for the death of a friend/family member, and questions bereaved caregivers wished they had asked health care providers in order to prepare for the death of a friend/family member. Demographic information was also collected at the beginning of the interview.
Each interview was audio-recorded and transcribed verbatim to preserve its authenticity; transcripts were reviewed and compared to the recording to ensure accuracy by the research assistant. Interviews ranged from 30 to 93 minutes and were conducted in participants’ homes, at the nursing home facility, or the offices of the research group. Each individual participated in one interview. Field notes were made by the research assistant after each interview to capture the contextual nuances of the interview.
Analysis
Qualitative responses from bereaved family caregivers of persons with dementia and health care providers were analyzed to identify major themes and categories using thematic analysis (Braun & Clarke, 2006). With this approach, researchers on the team who have experience in qualitative analysis (GT, SM, KR, TH) independently coded or gave meaning to all units of information within each participant response. Transcripts were read in their entirety in order to gain a sense of the whole interview and to identify key words, phrases, and emerging themes that might form codes. Codes were compared and contrasted and then aggregated and clustered into major categories and themes. Consistent with interpretive description, questions such as “what is happening here?” “what am I learning about this?” and “why is this here and what does it mean?” were pondered to gain a coherent understanding of the overall picture emerging and in consideration of the contextual nature of the data (Thorne, 2008). The five researchers met to compare their emergent coding schemes and to cluster these into the major categories. Differences were discussed until consensus was achieved.
Data management and rigor
Rigor, as it is understood in qualitative research, was ensured through (i) the generation of an audit trail which documented the decision making around the coding structure that emerged, (ii) the collection of data from heterogeneous participants (data triangulation), and (iii) the involvement of researchers from diverse disciplines in data analysis (investigator triangulation; Cypress, 2017). Ontologically, we embrace the notion of multiple realities and have reported on these multiple realities by exploring forms of evidence from different individuals’ perspectives and experiences. Epistemologically, as researchers, we worked to get as close as to study participants being studied and collected evidence based on their individual views of research conducted in the field (i.e., nursing home setting).
Findings
The overarching aim of this study was to identify what types of information family caregivers would deem useful in preparing them for their relative’s end-of-life and assist in informing them to make decisions about their relative’s care along the dementia trajectory. Study participants had a considerable amount of experience upon which to draw in helping to answer this question by virtue of either the length of time in working in the nursing home environment, providing consultative palliative care services, or being a caregiver to a person living with dementia (See Table 1). Participants were predominantly women (82%) and Caucasian (80%). Nursing home care staff were on average the youngest (range 23–69 years; mean 46.24 years), followed by the palliative care experts (range: 40–62 years; mean 50.86 years), and bereaved family caregivers (range: 52–88 years; mean 67.88 years).
Characteristics of study participants.
Bereaved family caregivers of residents with dementia and health care providers identified eight substantive categories essential to meeting family members’ needs for information and preparing them for the future. These categories include the following: (i) dementia in general, (ii) dementia toward the end-of-life, (iii) care of persons dying with dementia, (iv) the role of family caregiver as decision maker, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a nursing home. Direct quotes from study participants are presented to provide the best exemplars from the categories.
Overwhelmingly, both family caregivers and health care providers supported the idea of early and frequently information about dementia and its progression. All but one family caregiver indicated that they wanted more information, starting from the time of diagnosis, even if they acknowledged that the information may not fully apply to them at that moment. Being prepared for the future and knowing “what to expect down the road” (Family Caregiver 2; line 1353) in order to limit “surprises” was the main reason for wanting information. Information could be shared through written materials (e.g., pamphlets, websites), workshops, small meetings, or one-to-one interactions. However, family caregivers wanted health care providers to be proactive in providing this information and to follow-up with them afterwards.
Dementia in general
Both bereaved family caregivers and health care providers stressed the importance of having information on the type of dementia the resident had. Many bereaved family caregivers expressed that they had no idea that there were different types of dementia beyond Alzheimer’s disease and felt frustrated that health care providers often did not educate them on the changes that could be expected based on their family member’s specific type of dementia: So we had to do an amazing amount of research you know, thank goodness for the internet and on our own, about Lewy Body dementia. So, I think there’s a real gap when it comes to Lewy Body and maybe other forms of dementia. I didn’t know there was anything else but Alzheimer’s. (Family Caregiver 4; lines 404–407)
This lack of understanding of the subtypes of dementia and the changes that might manifest as a result can potentially lead health care providers to believe that family caregivers of people with dementia hold unrealistic expectations on the progression of dementia: Another thing that makes our work harder is the family that does not acknowledge the resident’s condition and the progress of dementia. In many cases, they expect dementia is a reversible process. And they expect the family member’s going to be as good as before. And that creates unnecessary conflicts between us and the families. And it creates an extra burden to our work. (HCP 7; lines 47–52)
Dementia toward the end-of-life
While having a grasp of the broad physical and cognitive changes to be expected for the specific subtypes of dementia was highly valued, both bereaved family caregivers and health care providers acknowledged that it was equally important to understand the specific changes expected in the last few months of life for someone with dementia. Framing this as “the brain dying or shutting down” was used by this health care provider to help illustrate the many systems affected toward the end-of-life: So as the brain dies, when you’re watching dementia, as the brain is dying they lose capabilities whether it’s walking, whether it’s speaking, swallowing starts to become [an] issue. (HCP 2; lines 302–304)
Helping family caregivers understand that having dementia involves more than just the loss of memory, that it fundamentally involves changes in speech, activity levels, swallowing abilities, and ambulation that progressively worsen toward death, is highly important in meeting their information needs and preparedness for end-of-life. This was particularly true with respect to changes in residents’ ability to eat and drink. On one hand, health care providers noted a resident’s refusal to eat as them exercising choice, but on the other, they were often accused by family caregivers that they were starving the resident: That’s a big thing a lot of times that they [family] think they’re starving them and they’re really thirsty (HCP 10; lines 242–243)
While it is understood that dementia is now one of the most common causes of death, for many health care providers they stress the importance of educating family caregivers on the factors which are most likely to be contributors of death in those with dementia. So I think it’s important to remember that people don’t die from dementia, people die from what dementia makes you vulnerable to which is sepsis from skin ulcers; pneumonia’s extremely common. Part of the dynamics of dying is that you can’t eat and can’t drink because you’re so weak and those are all the causes of dying. (Palliative Expert 5; lines 19–23)
This participant also spoke of residents’ preexisting comorbidities as contributing to death: It’s the side effects that generally kills you, not the dementia. It’s the other things that come with it. The falls. The lack of eating. Your other histories. You tend to have other health problems accumulate with this. So, it will eventually kill you. But very slowly unless there’s other diagnoses. (HCP 5; lines 676–680)
Finally, while not unique to the end-of-life experience of someone with dementia, health care providers and family caregivers acknowledged that being cued to the physiological changes that occur in the final days and hours of life was important: Periods of apnea. What’s apnea? Brain centre’s not telling you to breathe anymore. Why are their hands going blue? Why are their legs going blue? What’s mottling? And then you can begin, explain the process, it seems to help people. (HCP 5; lines 564–566)
Care of persons dying with dementia
Family caregivers identified having specific information needs, particularly regarding the type of care they could expect would be provided to the resident at the end-of-life. This need stemmed, in part, from not fully understanding or having had explained to them, what “comfort care” means; a term frequently invoked when someone is deemed to be dying. In contrast, other family members who had had this conversation with health care providers understood what to expect in the dying phase: They [staff] said that you know it is happening and all we are going to do is keep him comfortable and make sure that he’s not in pain in anyway. And that’s all you can do. I mean heaven’s sakes. They said, you know, the end, the end is near. There’s no point to, there’s no medication we can give him. He’s not processing food anymore. So that’s all we can do and will do. (Family Caregiver 9; lines 25–29)
Health care providers noted the importance of providing family caregivers with information on how distressing symptoms would be assessed and managed, particularly in those residents who had become nonverbal. The salience of this information is rooted in the connection between excellent pain management and its centrality to good care. As stated by one health care provider, “The number one issue with families, I don’t want my mom or dad in pain” (HCP 2; line 618).
The role of family caregiver as decision-maker
The additional responsibilities that family caregivers undertake, particularly around decision making, was another area that was important for caregivers to understand. Health care providers stressed the importance of family caregivers having conversations with the resident to discern and document their wishes and goals of care, often in the form of an advance directive or living will: If we could get more people to understand when they’re bringing a relative in [to the nursing home] that deterioration will continue to happen and when, while you have a chance, when you’re first diagnosed, that’s the time to talk to them to find out what they want. Most important. Get those advanced care directives from the resident if they can still do it. If they can remember or talk. (HCP 5; lines 145–147; 158–159)
Health care providers often expressed that a significant decision family caregivers are faced with is whether to transfer the resident to hospital to receive medical care that may or may not be beneficial (or necessary). Transferring the resident to hospital at the end-of-life is seen as particularly problematic by health care providers yet is the typical default response taken by family caregivers, in the absence of previously known wishes of the resident: But, you know, they [family] want them sent to hospital. They’re starting with pneumonia. They aren’t eating. They aren’t drinking. They’re dehydrated. Um. And you’re saying well is this really what you want? They’re going to lie on a stretcher. No. We have to do everything we can for mother. And then they go and then they are told, well we can’t do anything and send them back. And then that seems to traumatize people too. (HCP 5; lines 75–80)
Sustaining connection
Having an understanding of how to continue to meaningfully interact and respond to the resident as dementia progresses was an area identified as important for family caregivers to understand. As noted by one family caregiver: The biggest thing to accept, your parents or anybody who has been diagnosed with this, they are no longer the people that you’re used to. So getting upset with them, you know stay in the present, doesn’t benefit anybody. You, they get frustrated, you get frustrated. You feel hurt. You feel upset. So it’s just best to go with the flow. This is the moment that they’re in. Let them be happy in the moment that they’re in. (Family Caregiver 7; lines 117–122)
Part of responding to this need was health care providers educating family caregivers that their presence and voice could bring comfort, even though the resident may not verbally be able to respond to them: Even if it’s going in and just talking to them. Even if they’re not responsive, they can still hear. They might not be able to respond but I think it’s just important to be there and support them even though you feel like they don’t know who you are and they don’t understand you. (HCP 6; lines 303–306)
Continuing to care in this way, helped to foster and maintain the personhood and identity of the resident. Having family caregivers understand that the essence of the person they knew was still present and providing them with opportunities for meaningful engagement, was seen as important information to convey by health care providers: I think it’s important for family members to understand that the person is still there. And that person still can hear and they can, they still have sensation. I think a lot of time family members give up on the person with dementia because they don’t understand or that person doesn’t know what I’m saying. They don’t know who I am anymore. But I think it’s important to realize that person still needs quality experiences. (HCP 6; lines 294–299)
Emotional impact of dementia on caregivers
Helping family caregivers understand and normalize the range of emotions they may experience along the dementia trajectory was deemed very important by both family caregivers and health care providers: “It’s a difficult time. It’s a difficult time for all families. And they’re angry too because that person isn’t that person anymore” (HCP 5; lines 464–465). These emotions ranged from guilt, anger, depression, frustration, and grief. Many of these emotions stemmed from the changes they saw in their family member with dementia: It’s not the person you’ve loved or it’s not mom anymore. It’s this stranger that I don’t know. And I don’t like them. And they’re making me angry. You know. I feel guilt. It’s guilt. (Family Caregiver 5; lines 469–472)
Health care providers also noted that it was imperative to educate family caregivers on the importance of taking time for themselves, often as part of reconciling the emotional impact they were experiencing; too often, family caregivers downplayed their needs over that of the resident: It’s kinda directing them to get the support where they feel that they need it, or can we help them with those supports. Because the key at that point to family is, what do, what supports do I need to help me get through this? It’s really about the resident. Family don’t want, you know it’s not about me right now. (HCP 22; lines 1119–1122)
Relationships with staff
More frequently than health care providers, family caregivers identified having information needs regarding how best to interact and communicate with staff in the nursing home. Family caregivers acknowledged their responsibility in obtaining information from health care providers regarding the care of the resident. They saw that a part of being a caregiver was to be an active solicitor of information and advocate for the resident. Obtaining information could be challenging, because family caregivers often did not know the questions to ask: And I must admit it made a big difference because [daughter-in-law’s name] was a nurse, she did know things so. I think if I had gone in completely blind and not been with her, it would have been harder. Because I didn’t know a lot of questions. She would go and ask. It was a type of thing that if you don’t know mom, ask me, I will find out. I don’t know if I would have got a good response if I had gone myself. (Family Caregiver 1; lines 659–677)
In ideal circumstances, family caregivers felt they could approach health care providers with questions; however, many family caregivers felt like outsiders and intruders: They had regularly scheduled meetings where they would kind of go on a progression kind of thing. They would tell you how she’s doing now in these various areas. And maybe it was just me, my sister felt quite comfortable with it but I always felt like I was sitting in on their meeting, as opposed to them having a meeting with me. I didn’t really feel empowered to interrupt their discussion to ask questions. (Family caregiver 4; lines 795–803)
Health care providers noted the importance of allowing space for family caregivers to ask questions and to titrate the information based on their preferences: I’ll often say, can I speak frankly? And they’re like, please do. They want that honest, up front, open discussion. And to know that they have a say. They can choose, they can, they have a choice here. (HCP 26; lines 592–594)
Family caregivers also articulated the importance of having a clearer understanding of the various roles the nursing home staff played in the care of the resident. Health care providers emphasized the importance of including family caregivers as part of the health care team and that all team members played an important role in ensuring that the resident had a more comfortable death: Everybody has a role to play. And to reach out to all disciplines. And everybody would have a role to play in, in the resident’s dying process, living process. You may not necessarily recognize what the other person, their role is but take time to explore that. And that means the family too. Not just nursing but there’s the health care team and the family. Just emphasize the importance of everyone’s role in having a good comfortable death. (HCP 26; lines 848–854)
As part of building relationships, family caregivers had questions about how to share important information, particularly biographical information either about themselves or the resident, with NH staff. Sharing this information was seen by family members as important to shaping the care the resident received and allowing NH staff to relate to the resident on a personal level: Right off the bat they wanted to know that. Like what he was. And he was a teacher and he taught French all of his life. And there were one or two people around there who had French backgrounds so they’d talk to him in French and he was Ok with that too. He was a good singer so he’d always partake in any of the singing events that were there. He liked to paint. And many of what you see here are his. They [staff] accommodated whatever. But they knew that it was a cultural background and they’d chip in any way they could that way. (Family caregiver 9; lines 263–270)
General questions about life in a nursing home
The final set of information needs identified by family caregivers was captured as questions they had about life in general in the nursing home. In many instances, family caregivers expressed questions about whether they could bring in a family pet to visit the resident, particularly near the end of the resident’s life. Similarly, many caregivers wanted to know if they could bring in treats such as favorite foods for the resident. Other questions such as measures taken to protect the physical safety of the resident were raised more often by health care providers as important to educate families on, especially in regard to balancing safety and comfort: It’s important to treat the individual with respect with dignity. Maximize safety but at the same time not at the expense of the comfort. Really looking at the balance between safety and quality of life. And involve the family. Involve the family as much as possible. (HCP 26; lines 813–816)
Discussion
This interpretive descriptive study generated an empirical understanding of the information and support needs of family caregivers of residents living with dementia in nursing homes regarding the prognosis, clinical course, and end-of-life care of this illness. While the objective of this study was to understand these needs in relation to end-of-life preparedness, many needs emerged related to the context of care and family caregiver roles and responsibilities more broadly. Being prepared to enact decisional roles requires family caregivers to fully understand the progression of dementia, specifically the life-limiting nature and multi-system effect of this disease.
Our study again highlights the gaps in current understanding regarding the terminality of dementia and its effects beyond declining cognition (Andrews et al., 2017). In part, this stems from a basic level of dementia literacy and lack of understanding about what to expect across all stages of the illness; a frequent knowledge gap among those caring for people with dementia and their family caregivers (Prorok et al., 2013). For example, family caregivers in the study by Ball et al. (2015) were uninformed about expected weight changes related to dementia. Conversely, when family caregivers are aware that the changes being witnessed indicate an alteration in health status or may represent that the individual is dying, their ability to become more emotionally prepared for the person’s death is enhanced and the use of potentially invasive procedures is reduced (Mitchell et al., 2004; Wallace et al., 2018). Family caregivers of persons with end-stage dementia in the study by Shanley et al. (2011) specifically expressed the need for readily available information about the dying process. While the topic of death and dying in NH’s has often been expressed as taboo, it is clear that having a fulsome discussion regarding predictable changes that occur along the disease trajectory is both warranted and welcome, and a significant step toward family caregivers feeling prepared (Hovland-Scafe et al., 2017).
While research has indicated that few persons with dementia have completed advance care plans or have goals of care discussions in the nursing home environment (Dening et al., 2011; van Soest-Poortvliet et al., 2015), health care providers in the current study noted the significant benefit for the resident when this had occurred. Some of this benefit stemmed from limiting hospitalizations near the end-of-life but also in reducing decisional conflict. Advance care planning has been identified as critical to a good death in the nursing home context (Wallace et al., 2018), as it helps family caregivers draw on the prior knowledge of the resident’s preferences. While significant strides in recent years have been made in understanding best practices in advance care planning (Dixon et al., 2018; Piers et al., 2018), further research needs to help identify strategies that will enable this practice to move upstream and engage people living with dementia before their illness precludes them from participating in these discussions.
Maintaining connections and meaningful engagement with the person living with dementia were noted as another information need by our participants. Several studies have noted the prevailing fear that dementia “steals” the identity of those with this disease and that managing an ongoing relationship becomes significantly challenged (Broady et al., 2018; Feast et al., 2016). Participants in the current study expressed the distress and sense of loss noted in other studies that coincides with the progression of dementia (Albinsson & Strang, 2003). Feast et al. (2016) have put forth the helpful premise that much of this unmet need stems from the loss of the emotional bond with the person with dementia and invokes the importance of attachment theory in understanding these needs and the nature of this progressive emerging loss.
Intimately tied to overcoming the worry of diminished identity in the person living with dementia was the importance of maintaining the personhood and dignity of the resident. This theme has been noted by others (Davies et al., 2017; Hill et al., 2017; van der Steen et al., 2014) as a key aspect of quality care of residents with dementia, and particularly among those who are approaching the end-of-life. Helping staff understand who the person with dementia was prior to their illness is an important role identified by family caregivers (Hennings et al., 2013). Getting to know the resident as a person is understood by nursing home staff as important in ensuring the unique needs of the resident are addressed (Coker, 1998). Research examining the use of life-story work has described positive benefits on the attitudes of NH staff toward residents and that staff account for personal preferences in daily care and see residents as more autonomous (Hansebo & Kihlgren, 2000; Heliker, 2009; Pietrukowicz & Johnson, 1991). Systematic strategies aimed at eliciting this information needs to become part of routine clinical practice (Chochinov et al., 2015; Pan et al., 2016).
Family caregivers in the current study also identified the need to understand how they should interact with NH staff and their “new” role as caregiver within this NH environment. In some ways, learning about this role was manifest through trying to learn what they could and could not do within this context (i.e., could they bring in the family pet?). Congruent with the literature, family caregivers struggle with their changing role when their family member is admitted to a NH and negotiating relationships with NH staff is an ongoing process (Hennings et al., 2013). It is important for NH staff to recognize family members experience these challenges and create opportunities for them to express their fears and frustrations in safe, caring spaces.
The importance of family caregiver health and information to support their emotional needs was identified as an area of significant importance. This resonates with a recent systematic review conducted by McCabe et al. (2016) on the self-perceived needs of immediate family caregivers of community-dwelling persons with dementia. These authors noted significant needs in terms of addressing caregivers’ physical and psychological health along with the need to manage their own lives. Of particular importance was that in many cases, caregivers did not express their needs explicitly thereby suggesting the importance of creating the opportunities to have family caregivers explore their needs and ways to help meet them. While family caregivers in our current study acknowledged the importance of seeking help, often through attending self-help groups, other studies have noted that caregivers may not openly discuss their needs either because they do not know how to express them or do not place an importance or priority on their needs over that of the resident’s (Furlong & Wuest, 2008).
Finally, it is important to note that family caregivers expressed wanting information from an early stage of illness, yet they did not know the questions they should be asking of health care providers. Although they often have questions about death and dying as their relative’s illness progresses, research suggests that not knowing what to ask, worries about being perceived as ignorant, and feeling overwhelmed pose barriers to families talking with health care providers (Hebert et al., 2008). Family caregivers often perceive that health care providers do not have the time to spend with them. Although that they wished to have more regular formal meetings with the health care providers, research suggests that some family caregivers felt that their concerns and suggestions are often ignored, and that they are passive or have difficulty obtaining information regarding the care of their family member (Caron et al., 2005; Marziali et al., 2006). Moreover, empirical work identifies that when they do engage health care providers in conversation about these issues, family members pose questions that do not invite elaboration or an in-depth discussion of concerns (Wittenberg-Lyles et al., 2010). Future research is needed that will identify strategies aimed at optimizing family member–health care provider communication regarding the care of the residents with dementia in the NH setting.
Despite the valuable findings of this study, there are several limitations that deserve comment. First, this study was conducted in four different NH facilities all from a single, urban city. This study therefore may not be representative of all family caregivers, specifically we may not have adequately captured the information needs of rural family caregivers; a group that has been noted to have different needs in previous studies (Innes et al., 2011). These facilities also had a significant amount of staff stability, reflected by the length of employment of many health care providers. This is not typical of the NH sector where turnover can be particularly problematic and may contribute to family caregivers feeling dissatisfied with the quality of their relationships with health care providers and the information they receive (Majerovitz et al., 2009). Second, the majority of perspectives offered, both from bereaved family caregivers and health care providers were from White, females. As such the cultural understandings of death and dying (and dementia) of different groups may not be adequately captured nor their preferences for receiving information (Wallace, 2015). Obtaining a more diverse sample may revel unique needs not addressed in this current study.
Conclusion
Our findings suggest that family caregivers of nursing home residents with dementia have unique information and support needs, some disease specific, others more related to life in a nursing home in general. Health care providers need to support and encourage dementia literacy for family caregivers, in order to ensure they have the request knowledge and supports to make informed decisions along the disease trajectory. Health care providers need to be aware that in many instances, family caregivers may not feel comfortable broaching these issues with them, or they may doubt or be unaware of the legitimacy of their needs. As a step toward ensuring high-quality care for residents with dementia as they approach the end-of-life, health care providers must see family caregivers as deserving of their care and regard attending to their needs as paramount. Developing systematic strategies to engage family caregivers of nursing home residents with dementia in ongoing conversations about their needs is a key step towards meeting their needs. In this way, family caregivers for people living with dementia may be fully supported and more prepared for the death of their family member.
Footnotes
Acknowledgements
The authors sincerely thank all the participants who willingly and freely shared their experiences. They also thank Trisha Lindquist for her superior interviewing skills.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research project was supported by a grant joint-funded by the Canadian Institutes of Health Research (CIHR) and Research Manitoba.
