Clarifying the information and support needs of family caregivers of nursing home residents with advancing dementia

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.

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)