Informal caregiver experiences at the end-of-life of individuals living with dementia with Lewy bodies: An interview study

Introduction

Understanding the experiences and roles of informal caregivers (hereafter referred to as “caregivers”) is critical given the frequency with which family members provide informal dementia care. In 2015, 3.4 million adults aged 65 and older lived with dementia in community settings in the United States. Almost all (95%) of these individuals received informal care, provided by an estimated 5.7 million caregivers (Chi et al., 2019). Unpaid care was the only support for 63% of these individuals with dementia, most commonly provided by spouses and adult daughters (Chi et al., 2019). Increasing research explores drivers of caregiver burden in dementia, but literature examining caregiver roles at the end of life in dementia is limited. Most caregivers of individuals dying with dementia report feeling unprepared for their loved one’s death (Armstrong et al., 2019a, 2019b; Hovland-Scafe & Kramer, 2017). A systematic review of qualitative studies with individuals with dementia and caregivers regarding advance care planning and end-of-life dementia care identified five themes: avoiding dehumanizing treatment and care, confronting emotionally difficult conversations, navigating existential tensions, defining personal autonomy, and lacking confidence in healthcare settings (Sellars et al., 2019). However, the supporting studies included individuals with various dementias and often occurred when participants were anticipating death, rather than with bereaved family caregivers.

No existing studies specifically examine the experiences of informal caregivers at the end of life of individuals with dementia with Lewy bodies (DLB), despite the fact that caregiver burden is higher in DLB compared to Alzheimer disease (AD) dementia (Lee et al., 2013; Ricci et al., 2009; Svendsboe et al., 2016). Dementia with Lewy bodies is one of the two diseases (along with Parkinson disease dementia) under the Lewy body dementia umbrella. Lewy body dementia is the second-most-common neurodegenerative dementia in the United States after AD (Barker et al., 2002). Individuals with DLB have dementia plus core features including fluctuating alertness, visual hallucinations, REM sleep behavior disorder, and parkinsonism (McKeith et al., 2017). Supportive clinical features include sensitivity to antipsychotic medications, excessive daytime sleepiness, autonomic dysfunction (including orthostatic hypotension, constipation, and urinary incontinence), postural instability, falls, non-visual hallucinations, delusions, anxiety, depression, and apathy (McKeith et al., 2017). This symptom profile explains why caregiver burden is higher than DLB than other dementias: patient characteristics that drive informal caregiver burden most strongly in dementia are the presence of behavioral and psychological symptoms and the physical limitations/functional status of the person with dementia (Cheng, 2017; Chiao et al., 2015). Many of these features worsen as individuals with DLB approach the end of life (Armstrong et al., 2019a, 2019b).

Furthermore, individuals with clinically diagnosed DLB progress more quickly to death than individuals with AD dementia (Price et al., 2017; Williams et al., 2006). Individuals with clinically diagnosed DLB live a median of 3–4 years after diagnosis (though with a wide range) (Armstrong et al., 2019a, 2019b; Larsson et al., 2018; Price et al., 2017; Walker et al., 2000). Most die from dementia-related causes including failure to thrive and aspiration pneumonia/swallowing difficulties (Armstrong et al., 2019a, 2019b; Garcia-Ptacek et al., 2016). Given the frequency of informal dementia caregiving in the United States, the unique symptom profile in DLB compared to other dementias, the known high rate of caregiver burden in DLB, and dementia-related causes of death in DLB, we aimed to investigate the end-of-life experiences of informal caregivers of individuals with DLB who died within the prior 5 years.

Methods

Population and recruitment

Participants were recruited through an online-only survey investigating cause of death and end-of-life experiences in DLB (Armstrong et al., 2019a). Survey eligibility required respondents to be fluent in English and an informal caregiver, family member, or friend to an individual who died with DLB in the prior 5 years. The Lewy Body Dementia Association website recruited for the survey. One survey question queried respondent willingness to participate in a telephone interview. If they answered affirmatively, they received the principal investigator’s contact information to learn study details. Individuals e-mailing the principal investigator received the informed consent form and semi-structured interview guide. Volunteers were invited largely sequentially but with purposive sampling to achieve representation of roles (spouses and children) and genders.

The University of Florida Institutional Review Board provided approval (IRB201701657). The study was conducted under a waiver of documentation of informed consent. After questions and verbal consent at the beginning of the call, recording and interviewing started.

Data collection and analysis

The principal investigator drafted the semi-structured interview guide based on existing literature and questions derived from clinical care and revised it based on suggestions from three caregivers for individuals who died from DLB, Lewy Body Dementia Association staff, and two Lewy Body Dementia Association scientific advisory board members. The final guide included 11 open-ended questions, starting with a question about general experiences and ending with questions about specific aspects of the end-of-life experience (Supplemental Material 1). The principal investigator, a DLB specialist, conducted the phone interviews. She had no prior relationship with participants. A professional service transcribed the interviews verbatim. Member checking of themes was not performed. Participants could opt to receive study findings.

Investigators used tables in Microsoft Word® 2016 to organize data and a qualitative descriptive approach to identify and organize themes (Colorafi & Evans, 2016). Overarching themes were shaped by the topics covered in the semi-structured interview guide (e.g., experiences at end of life, decisions which had to be made, and hospice use), but specific coding themes were derived directly from participant statements. A research assistant with qualitative experience but no DLB expertise independently analyzed five interviews to create a draft log of themes and related quotes (open coding) (Auerbach & Silverstein, 2003). The principal investigator served as the second coder and reviewed and revised the draft coding. Consensus was reached regarding emerging themes and this consensus was used to establish the analysis codebook. The research assistant analyzed remaining transcripts using a constant comparative technique, revising themes and subthemes if needed (axial coding) (Auerbach & Silverstein, 2003). The principal investigator reviewed and revised coding again after 20 and 30 interviews. The principal investigator assessed saturation during interviewing; both primary coders reassessed saturation during analysis. Co-investigators gave feedback after the initial coding. The current analysis focuses on caregiver experiences; interview themes relating to the dying experience and barriers to quality end-of-life care are reported separately (Armstrong et al., 2019a, 2019b). Consolidated criteria for reporting qualitative research guided study reporting (Supplemental Material 2) (Tong et al., 2007).

Findings

Data collection and participant demographics

The Lewy Body Dementia Association posted the survey link on 9/1/2017. Over 400 individuals completed the survey and over 60 volunteered for the interview within 1 week, so investigators removed the survey question querying interview interest. Investigators contacted 36 volunteers. Thirty completed interviews, four did not respond after their initial query, one opted not to participate given scheduling difficulties, and one failed to attend a scheduled interview. Investigators notified 47 volunteers that recruitment targets were reached. Interviews occurred between 9/15/2017 and 10/30/2017.

Most participants were women: 13 daughters, 11 wives, one daughter-in-law, one sister, and one niece. Two husbands and one son participated. Participants were numbered in interview order. The study collected no additional caregiver demographics. Interviewee characteristics were similar to those of the survey participants: 89% of 657 survey respondents were women, 42% were spouses, and 53% were children (Armstrong et al., 2019b, 2020). Interviews averaged 31 min. The analysis identified five main themes: (1) caregivers as the main drivers of care, (2) the impact of DLB features on end-of-life experiences, (3) experiences relating to the caregiving role, (4) death and post-death experiences, and (5) supports employed by caregivers in the end-of-life period (Table 1).

OPEN IN VIEWER

Table 1.

Themes and subthemes regarding the caregiver experience at the end of life of individuals with dementia with Lewy bodies.

Main themes	Subthemes
Caregivers as the main drivers of care	Caregivers making the diagnosis
	Caregivers having to figure out what to do on their own
	Caregiver as advocate
	Caregivers education physicians
	Caregivers having to direct and check medical decisions
Impact of DLB features on end-of-life experiences	DLB features impacting end-of-life caregiver experiences
	Fluctuations
	Hallucinations
	Delusions
	Rapid eye movement (REM) sleep behavior disorder
	Autonomic symptoms
	Physical limitations, falls
Experiences relating to the caregiving role	Caregiver role all-encompassing
	Stopping work or losing income due to caregiving
	Financial stressors
	Lack of sleep
	Being overwhelmed
	Physical demands, cost
	Family challenges
	Needing more caregiver support to help make decisions
Death and post-death experiences	Special experience versus painful one
	Needing to understand more about what to expect
	Uncertainty regarding timing at the end of life
	Lack of follow-up after death hurtful
	Challenges with post-death planning (e.g., funeral expenses) and experiences (e.g., poor health)
Supports employed by caregivers in the end-of-life period	Paid, unpaid assistance
	Available resources
	Making memories
	Individual approaches

Note: DLB: dementia with Lewy bodies.

Impact of DLB features on end-of-life experiences

Many features common to DLB affected caregiver experiences from the times leading up to end of life and the end-of-life period itself. Fluctuations were a common experience: “He would go from absolute crazy, to, you know, being lucid” (4, daughter), “he would have these clear moments… those were the fleeting moments” (18, wife), “he would come in and out” (19, daughter). Hallucinations were problematic for some of the caregivers and their loved ones with DLB: “she was in distress, and her hallucinations were never benign; they were always horrific” (8, daughter), “he refused to eat and said there was concrete all over his food” (15, wife), “that was really a very difficult time because he could not comprehend that [the vision he had of people all over the house] wasn’t real” (27, wife). Delusions, infidelity, and physical violence were particularly difficult for caregivers:

We did go through a very bad patch of him roaming around thinking he was Mr. I’m Gonna Have an Affair with Whoever I Can Find. That was very traumatic for me… We'd had a very strong marriage… So that was terrible to go through. Terrible, terrible, terrible. If I had known that this was part of what was going on with this disease, it would been dealt with very differently. And I would've—my heartbreak would've been very different. (18, wife)

Several caregivers reported that behavioral symptoms prompted the need for institutional care. While fluctuations, hallucinations, and delusions were the most commonly described symptoms, other experiences included needing to get a hospital bed because the person with DLB was acting out their dreams (REM sleep behavior disorder) and making it even harder for the already sleep-deprived caregiver to rest, struggling with problematic constipation and urinary incontinence, and an inability of caregivers (particularly wives) to help the person with DLB (e.g., lifting) due to physical limitations.

Experiences relating to the caregiving role

Numerous caregivers described an inability to safely keep their loved one with DLB at home, and challenges relating to finding a memory or skilled nursing facility where he or she would be accepted. Regardless of whether informal caregivers provided care at home or with their loved one in a facility, participants described the caregiver role as all-encompassing:

I mean, 24/7… There were times where I would have to… leave the bathroom door open, and listen while I’m going to the bathroom—- in case you heard the door open. At that point, in fact, I was very close to putting locks on the door on the inside. (6, husband)

Multiple participants—both children and spouses—reported that they had to stop working or close their business in order to care for their loved one with DLB. Lack of work caused financial stress, as did the cost of home care and facilities.

My aunt had saved all her life and didn’t have children… but, you who can afford $24, $26, $28 an hour? Are you kidding me? Nobody can afford that… it’s just ridiculous, the elder care in this country. (7, niece)

Some participants had to continue to work, and balancing work, caregiving, and other family responsibilities were challenging: “I couldn’t go out anymore, trying to work, trying—I had children myself. I was going crazy trying to manage everything (13, daughter).” Several children serving as caregivers reported having to quit their job and move back home to care for a parent with DLB or having to travel weekly to provide support, returning home only on weekends for a change of clothes and to sleep in their own bed.

Multiple participants described lack of sleep and fatigue making things more challenging: “the most difficult thing for me through the whole process was having a lack of sleep” (25, wife), “I would go two and three nights of no sleep” (13, daughter), “as a caregiver, you’re already extremely fatigued… it’s just overwhelming” (8, daughter), “I was just so tired and overwhelmed that I just wasn’t thinking straight” (16, daughter). Caregiving also had physical costs from both supporting the person with DLB (e.g., lifting for toileting) and the toll of caregiving generally. Caregiver health problems added further complexity: “At the end I was right in the middle of chemo… they almost came and took him, because I wasn’t here, but my caregiver stayed with him 24 hours a day” (30, wife).

While family could be a source of support, many participants described family challenges negatively affecting caregiving. These included a lack of support from family members—“most of my siblings really didn’t spend any time in those last two years with my dad at all; I bore the brunt” (10, son)—and family members not understanding—“I tried to have his family know what was going on, but when they saw him, he acted half-normal” (4, daughter), “I had a sibling that was in denial” (8, daughter). Caregivers described updating and educating family members by phone as “grueling.” Caregivers also related that it was challenging making decisions with other family members and relatives resenting when they were not included more in decision-making.

I don’t know, because I’m still in the middle of it, what would have happened—what could have been done any differently with the rest of the family. And they took it so personally that I didn’t call a big family conference— to ask where he should go in all this. And it was a matter of I couldn’t handle it. There was an opening. I had to do it now. And if I had asked each one of ‘em, we might still be here trying to figure out because each one of ‘em would have had a different idea. (30, wife)

Many participants described needing more caregiver support and more help to make decisions.

The stress and the burnout the caregivers experience; there’s just not enough support there. And it’s not just at end of life. (13, daughter)

Over half of participants reported regret about the care they provided—that they did not stop working earlier, medical decisions they made, using skilled nursing facilities, and/or missing the moment of their loved one’s death.

I have many regrets on my attitude and reaction and responses to a lotta this... Sometimes my impatience and my weariness would get the best of me, and I would lash out, and I would say things that were hurtful, and I would be intolerant and impatient, and just so weary of everything…. And if I could go back and control that and do that again, I would. But I honestly don’t know how you do that… (27, wife)

Death and post-death experiences

The caregiver experience of the death of their loved one with DLB varied. For some families, this was a special experience:

Shortly before he died, I came into his room, and he called me by this term of endearment that was—it’s so private that I’ve never repeated it to anybody. It was just a made-up name. All of a sudden—and he hadn’t said anything like this in years. You know, so I hang onto that. (22, wife)

For other participants, the end of life was painful:

She was just kind of in and out and just occasionally mumbling—you could pick up some things—and she just said something like, “You put me in the hospital. I would never put anybody here, ever—anybody.” That was the last thing she said to me. Yeah. It was really hard. (3, daughter)

While many hospice experiences were positive, caregivers described a need to understand more about what to expect and when medications could be administered:

It was very surreal, actually. The hospice team was nice. It was a little shocking because we didn’t realize that my dad wasn’t going to be eating or drinking there. (19, daughter)

Timing was a major theme for caregivers around the time of death, relating to how long their loved one was expected to live, when to bring family to the bedside, and giving medications:

When we finally came to the decision with hospice to withdraw food—they told me it would be about 10 to 14 days, but it ended up being more like 3 months. It was awful. (5, wife)

Participants described lack of follow-up after their loved one’s death as hurtful:

And during the time that he was dying, you know, they’d all come in in the morning… They took care of me. When he died, I have to say, I never heard from them again, “Oh, we loved [husband]. We’re gonna stay in touch with you.” It was like he’d never existed. But that would’ve helped, you know, if they’d sent us a condolence card or something. (22, wife)

Having to plan a funeral at the time of death was another challenge, with many details to arrange. One caregiver described the onset of health problems after the loss of her husband. Spouse caregivers described support from their children as particularly helpful after the death of their loved one with DLB.

Supports employed by caregivers in the end-of-life period

While the caregiving role and period surrounding the death of the individual with DLB were universally challenging, participants described strategies that helped through this period and afterward: using paid and unpaid assistance, widely available resources such as support groups, making memories, and individualized approaches (e.g., finding value in helping others) (Figure 1).OPEN IN VIEWER

Discussion

Summary of new findings

This is the first study to investigate the caregiver experience of end of life in DLB, a dementia with unique symptoms that affect end-of-life experiences. The experiences of informal caregivers of individuals with DLB were often consistent with experiences of caregivers of individuals with dementia more generally, as outlined above. However, study findings highlight several issues that are unique to DLB. These will be critical to address in order to improve end-of-life care for individuals and families living with DLB. Caregivers described experiences throughout the DLB course affecting the end of life, emphasizing the importance of improved DLB diagnosis and care even before the end-of-life period. Many respondents described that their medical teams lacked knowledge regarding DLB, underscoring a need for improved HCP education. While behavioral symptoms (e.g., hallucinations and delusions) and impaired physical abilities are known drivers of caregiver burden, the impact of these symptoms is likely greater in DLB than other dementias as these are core features experienced by most individuals living with DLB. Better treatments for these symptoms are needed, as is improved support for caregivers dealing with these challenging issues. Lack of knowledge regarding what to expect was commonly reported. Thus, current descriptive findings can be used to counsel other caregivers of individuals with DLB facing the end-of-life period, including topics relating to symptom changes when approaching end of life, varied death experiences, and strategies other caregivers employed to cope and find meaning.

Study limitations

Most participants were spouses and adult daughters, consistent with US dementia caregiver statistics (Chi et al., 2019). Demographics other than gender and role were not collected, a study limitation. Participants were all US-based except one, limiting generalizability to other healthcare systems. Recall bias was minimized by recruiting only individuals whose loved one died in the prior 5 years. It is possible that reported experiences differed between participants at different times since their loved one’s death, but the duration of time between the death and interview was not collected. Participants may have volunteered because of particular experiences or strong views, but identified themes were consistent with prior research.

Future directions

This study provides detailed caregiver accounts that can be used by HCPs to counsel other caregivers facing similar circumstances. Findings highlight a need for improved HCP and caregiver education regarding DLB in general and at the end of life. Future research is needed on optimal strategies to improve HCP and caregiver education, predictors of the end of life in DLB, symptomatic treatments for DLB features affecting quality of life and caregiver burden, and approaches for improving quality end of life in this population.

Conclusion

End-of-life experiences for caregivers of individuals with DLB built on the accumulated burden of the disease course, where caregivers were often responsible for driving DLB care—from making the diagnosis to educating HCPs and double-checking medical decisions. While many end-of-life experiences were consistent with those described more generally (e.g., financial stresses, poor sleep, being overwhelmed, and needing increased education and support), many DLB features specifically affected end-of-life caregiver experiences and contributed to burden. Improving caregiver experiences at the end of life in DLB will require improved diagnosis and care for individuals with DLB and also better strategies for treating behavioral symptoms. More research is needed regarding drivers of quality end of life for individuals with DLB and their families and how these drivers and strategies may differ between dementias.

Supplemental Material

Supplemental Material