Lay Caregivers’ Experiences with Caring for Persons with Dementia: A Phenomenological Study

Abstract

Biomedical advancements today allow older adults, including those with dementia, to live longer, with most living at home with a lay caregiver. Recent research documents the stressful role of caregiving to persons with dementia (PWD). This qualitative phenomenological study describes the lived experience of caregivers caring for PWD, including their experience with palliative care. A community sample of lay caregivers (N=11) underwent recorded individual interviews (each approximately one hour). Interviews were analyzed following van Manen’s approach to isolate thematic statements. Most caregivers were older (M 71, SD 9.6; range 53–84 years) and female (n=10). Study themes included: Uncertainty: The Slippery Slope, The Sense of Loneliness, Complexities of Frustration, and On the Other Side of the Spectrum. Findings illustrate that these caregivers are dealing with a range of dynamic feelings about their experiences. Opportunities exist for health care professionals to discuss such feelings and refer caregivers to supportive services including palliative care.

Background

Informal caregivers provide a critical role in supporting older adults to age in place. Yet, substantial research studies document caregiver burden encompasses not only physical issues associated with the laboring aspects of caregiving, but also significant emotional and financial issues (Wolff, Spillman, Freedman, & Kasper, 2016). Of note, up to 76% of caregivers learn their skills ‘on their own’ (Reinhard et al, 2019), termed years ago as “involvement in the dark” (Andershed & Ternestedt, 1998). And yet, health care professionals ask caregivers if they are in need of help less than 30% of the time (Wolff, Friedman, Mulcahy & Kasper, 2020). In spite of caregiver burden and the potential need for need assistance, caregivers provide approximately $470 billion in uncompensated care (Reinhard, Feinberg, Choula & Houser, 2015). Having an improved understanding of the experiences of caregivers is paramount in supporting caregivers.

Alzheimer’s disease (AD) and related dementias (ADRD) are progressive neurodegenerative diseases increasing the need for caregivers. Burdened with a fatal disease having no cure, once symptoms appear, persons with dementia may live 10 or more years. Many of those years require increasingly complex caregiving due to memory decline, impairment of activities of daily living, and behavioral disturbances of the person with dementia (PWD). Over 50 million people are living with dementia worldwide with associated costs of care being over $1 trillion dollars (Patterson, 2018). Institutionalizing a person with dementia (not always a family’s choice) is costly, with calculated costs ranging from $7,000 to over $8,000 per month for care in a skilled nursing facility (SNF) (Genworth, 2019; Rorich, 2019). Up to 83% of PWD are cared for at home (Friedman, Shih, Langa & Hurd, 2015). This alarming scenario points to the importance of the need for increasing numbers of healthy and able lay caregivers.

Accounting for 30% of all caregivers, over 15 million caregivers are providing care (including nursing care) to PWD (Alzheimer’s Association, 2019; Reinhard, Levine & Samis, 2012; Reinhard, et al, 2019). It is well recognized that the work of lay caregivers improves PWD functional abilities (Van Ness, Vroomen, Leo-Summers, Vander Wyk & Allore, 2019) and decreases neuropsychiatric behavior frequency (Semiatin & O’Connor, 2012). These positive changes have been accounted for when caregiver resilience (Chan, Yap & Khalaf, 2019; van Wijngaarden, van der Wedden, Henning, Komen & The, 2018) and self-efficacy (Semiatin & O’Connor, 2012) are high, allowing for caregiver adaptation to their situation (Jones, Woodward & Mioshi, 2019).

However, many of these caregivers assumed these responsibilities without a formal understanding of dementia or any professional caregiving skills. As a result, they experience extensive burden associated with their role. Not surprising, depression is more common among caregivers who have more perceived unmet needs (e. g., understanding dementia, skills in performing care tasks, and emotional support) and who are caring for PWD with more disruptive behaviors (Bejjani, et al, 2015; Garcia-Alberca, Lara & Berthier, 2011). In addition to depression, more recent research has demonstrated increased anxiety, insomnia, loneliness, and even a decline in cognition among caregivers of PWD (Author, 2019; Yan, Li, Chen, & Jia, 2019).

On the other hand, among Latino family caregivers, spirituality has been identified as a mediator of stress allowing caregivers to experience caregiving in a more positive context (Hodge & Sun, 2012). Positive gains among 57 Hong Kong Chinese caregivers included mastering care skills, feeling a sense of purpose, and learning to use humor to buffer difficult situations (Cheng, Mak, Lau & Lam, 2016). Among an African American group of caregivers (n = 211), caregiving gave them “a more positive attitude toward life” compared to white Caucasian and Hispanic caregivers (Roth, Dilworth-Anderson, Huang, Alden & Gitlin 2015, p. 813).

High levels of self-efficacy and internal locus of control have been associated with such positive emotions and experiences of caregiving resulting in less stress (Semiatin & O’Connor, 2012). Some studies have highlighted measures of resilience, self-efficacy and internal locus of control, but far fewer have explored the lived experiences of caregivers that may enlighten our understanding of a wider range of caregiving, including systems of support that may be helpful throughout the entire progression of dementia.

One such system of care, palliative care (PC), is specialized health care for persons with serious life-limiting illnesses, with no defined length of life. Frequently confused with hospice care, PC is not just end-of-life care. It addresses relief of patient symptoms due to physical problems, but also emphasizes an interdisciplinary team approach to provide services early to patients and their caregivers to assist them in coping with psychological, spiritual, and social challenges while meeting their own competing responsibilities (Abassi, 2019; Center to Advance Palliative Care [CAPC], no date). These services may be especially helpful to caregivers of PWD throughout the beginning as well as extended years of typical dementia progression.

The objective of palliative care is relief from physical, emotion, and spiritual issues regardless of the diagnosis, trajectory of the course of a disease, or expected length of life that could be a journey of many years. Importantly, patients can seek curative care while being in a PC program; especially important for PWD in the early course of their disease. The overall goal of palliative care is to optimize quality of life (Meier & Morgan, 2019). Patients and family members work with skilled interdisciplinary teams so that their values, culture, preferences, and goals are respected. However, research has demonstrated that much of the health care community, including physicians, does not understand the differences between PC and hospice end-of-life care (Meier & Morgan, 2019).

Most publications addressing dementia and PC have focused on hospice and the end-of-life stage of dementia. While much is known about PC in general, including outcomes of this type of care for patients with various life-limiting medical diagnoses, less is known about PC’s effect upon PWD, especially during the earlier stages of dementia. Other publications discuss PC guidelines and quality indicators (Lliffe, et al, 2013; Lloyd-Williams & Payne, 2002; van Riet Paap et al, 2014), health care professionals’ opinions about PC (Davies, et al, 2014; Fox, et al, 2018; van Riet Paap, et al 2014), and screening for PC (Ernecoff, Wessell, Gabriel, Carey & Hanson, 2018). While PC has been suggested as a possibility to ameliorate caregiver stress (Diwan, Hougham & Sachs, 2004), no published studies have directly reported on the caregiver lived experience that includes references to PC.

Persons with dementia are less likely to be referred to PC compared to other persons with life limiting conditions (Harris, 2007) restricting their caregivers’ access to any benefits of PC. Not surprisingly, only 32–40% of caregivers have endorsed an understanding of PC (Gabbard, et al, 2019). Importantly, after a discussion on the current research on stress and strain of caregiving, the 2019 Alzheimer’s Disease Facts and Figures publication does not include any mention of PC, leading to further evidence that additional research is needed to understand how PC may benefit caregivers of PWD, especially from their unique lived experience.

Methods

Design

The purpose of this qualitative phenomenological study, using a hermeneutic approach, was to reveal the lived experience of caregivers who were caring for PWD, including whether that experience involved any familiarity or involvement with palliative care. Selection sampling (Polkinghorne, 2005) was used to recruit participants. Each participant was an active caregiver and semi-structured interviews were used to situate these participants in their current circumstances. Additionally, investigator writing (e. g. notes, abstracts) was ongoing throughout the work beginning with the study’s conceptualization, through data collection, analysis, and identification of significant findings. This period of writing allowed for a view of the details as well as the whole in terms of the caregivers’ experiences and feelings. Ongoing writing allowed investigators to actively address the voice of the participants, a critical component of this qualitative method. As one part of a reduction process to reveal an essential structure of the lived experience, bracketing was used to minimize the effect of investigators’ beliefs (van Manen, 2016). This was specifically accomplished through team discussions of subjective feelings and ideas and expectations, as well as, clarifying and describing investigators’ backgrounds and roles.

Researchers’ Background and Roles

While diverse, all six researchers had experience working with PWD as well as caregivers of PWD. Specifically, at the time of the study four were nurses (A.M.M., K.S., E.S. & B.B.), one a community resource program coordinator (G.P.), and one a neuropsychology scientist (G.M.P.). Two of the six were employed by universities with significant time spent teaching and conducting research (A.M.M.) and leading an educational core for a research setting and conducting research (G.M.P.); another was employed by a regional health insurance company in the case management department (G.P); one was employed by a local hospital serving as the faith community nurse (B.B); one was employed as a community educator of older adults (E.S.); and one was recently retired but conducted a caregiver support group at a local community church (K.S.). The PI, experienced with the phenomenological method, provided guided mentoring so that all team members could participate in the conceptualization of the study as well as have direct involvement in its various aspects. Two nurses with extensive interview experience (A.M.M., E.S.), who were not previously known by participants, conducted the interviews. All team members participated in data analysis and writing.

Setting and Participants

The study was conducted in a small sized community with a permanent population of just over 25,000 in the southeastern part of the United States. Located in a temperate climate, the population doubles with part time residents during winter months. Study participants included a community sample of lay caregivers (N=11); all but one was a permanent resident. Recruitment began by inviting members of a faith-based caregiver support group who were currently the primary lay caregiver of a PWD. The one-hour caregiver support group meetings were led by a masters prepared nurse and were dialog-based (not activity-based) so members had familiarity with sharing their feelings about their ongoing experiences. Recruitment continued via snowball sampling with original participants sharing study brochures with other prospective participants across the community. Sampling was concluded when the team agreed that the data saturated the identified themes.

Data Collection

Data were collected during August, 2018 after institutional review board (IRB) oversight was designated for the study. All participants signed an IRB approved consent. An investigator designed demographic survey was completed by asking participants a variety of background questions (e. g., age, race/ethnicity, relationship to care recipient, use and hours of paid caregivers). Individual, private, semi-structured interviews were conducted. Participants displayed comfort with the interview process. Many displayed immediate ease with discussing their feelings about their experience, some possibly due to their experiences with their caregiver support group process. Few interviews exceeded an hour in order to respect the participants’ commitments to their caregiver role and minimize any anxiety felt by the participants related to being away from the PWD. While data appeared to saturate the emerging themes with the 9^th participant, two additional participants were interviewed to ensure the data collected was representative of the lived experience. Analysis of the 10^th and 11^th participant interviews confirmed that no additional interviews were needed beyond participant number eleven.

Using an opening statement, participants were requested to tell the interviewer about his/her caregiver situation. If feelings were not addressed, participants were prompted with the following: “How does it feel to be a caregiver?”; “What are some of the feelings you have experienced?”; “What do you feel about the future of your situation?”. If the topic of palliative care was not brought up by the participant, the following was asked: “Some caregivers have felt palliative care services have been helpful. What do you know about these services?” If participants demonstrated knowledge, the intent was to ask the following: “How do you feel about palliative care for your situation?” Finally, all interviews concluded with the following: “Is there anything else you would like to tell me about your experience or feelings about being a caregiver?”

All interviews were digitally recorded verbatim and then transcribed by a transcription service. Field notes were kept by the two interviewers and used to inform data analysis.

Data Analysis

Data analysis was ongoing beginning with the first participant. All interview transcripts were distributed to and read by each of the study investigators for analysis. Each investigator was responsible for leading the discussion on one to three transcripts. Transcripts were analyzed following van Manen’s approach to uncover thematic aspects and isolate thematic statements (van Manen, 2016).

In-person meetings with investigators were used to discuss the ongoing analyses. Early meetings focused on situations of being a caregiver of a PWD and later meetings focused on the meanings of those situations – in other words, the feelings of caregivers associated with their experiences. For example, ‘being isolated’ was an early stage situation. Further analysis, including continued transcript reading and writing, revealed a more reflective understanding of feeling “lonely”. van Manen (2016) suggests questions to be answered during this stage and include: “What is going on here?”; “What is the notion of this idea?”; and “How can one capture this notion?”. In concert with these questions, investigators also considered lived space, body, time, and relationships (van Manen, 2016). As an example, lived time was experienced by some participants as “time standing still”. Final analysis meetings focused on isolating representative quotations for study themes and writing summaries for a conference abstract, a meeting with local caregivers, and this manuscript.

Rigor

The Consolidated Criteria for Reporting Qualitative Research (Tong, Sainsbury & Craig, 2007) were utilized as a procedural process framework for the study. All researchers read and participated in analyzing each transcript. Four two-hour sessions were then held for individual transcript presentations, analysis discussions, and summary writings. Final themes were determined by consensus agreement. Study findings were verified at a caregiver support meeting attended by eight lay caregivers of PWD, three of whom were study participants (remained anonymous). Study themes were acknowledged as primary and important, and quotes were acknowledged as representative of the themes.

Ethics

The current study was conducted under the oversight of the University of San Diego IRB. All researchers had current protection of human subject certificates. Written informed consents were obtained prior to the interviews. All digital interviews were transcribed by certified transcriptionists.

Results

A total sample of 11 family caregivers, mean age of 70.90 (SD = 9.64) years and all white Caucasian had been providing care for an average of 4.72 (SD = 4.04) years. The majority of caregivers (n = 8; 72.7%) were spouses of the care recipients; only one caregiver spouse was male. The balance of three caregivers (27.2%) were daughters of the care recipients; one was employed full time and one part time. All other caregivers were retired. None of the participants had competing caregiver demands such as other parents or children. The PWD had been living with a diagnosis of dementia on average for 6.64 years (SD = 4.73), and their caregivers perceived the severity of their dementia as ranging from mild to severe. All PWD lived in their private homes. Less than half of the PWD (n = 4) had paid caregivers (range of hours 30–60 per week), in addition to their family caregiver. Sociodemographic data are shown in the Table.

Table.

Sociodemographic Data

Participant ID	Age	Relationship to Care Recipient	Education	Care Recipient Lives with	Dementia Severity as Perceived by Caregiver	Paid Caregiver Hours
P1	76	Wife	Graduate School	Wife	Mild	n/a
P2	65	Daughter	Graduate School	Alone	Moderate	35
P3	76	Wife	College	Wife	Moderate	n/a
P4	53	Daughter	Graduate School (1 yr)	Husband	Moderate	60
P5	71	Wife	High school	Wife	Mild	n/a
P6	59	Daughter	Graduate School (1 yr)	Daughter & Son-in-law	Moderate	n/a
P7	84	Wife	College (1 yr)	Wife	Mild	30
P8	70	Wife	College (1 yr)	Wife	Moderate	n/a
P9	83	Husband	Graduate School	Husband	Severe	60
P10	77	Wife	Graduate School	Wife	Moderate	no
P11	66	Wife	College (1 yr)	Wife	Severe	no

Note. n/a is not applicable.

Four main themes revealed the lived experience of caregivers who were caring for PWD. These included (a) Uncertainty: The Slippery Slope; (b) The Sense of Loneliness; (c) Complexityof Frustration; and (d) On the Other Side of the Spectrum. The themes were dynamic, elucidating the ups and downs of feelings experienced. Themes represented both challenging and positive experiences, with, in many cases, the type and degree of support determining the caregivers’ experiences.

Uncertainty: The Slippery Slope

This theme refers to how caregivers described a myriad of feelings of uncertainty while caring for a PWD who has progressing dementia. They reported feeling uncertain about the progress and severity of dementia symptoms, managing unpredictable behaviors, and planning for what appeared to be an unclear future.

As time progressed, caregivers were keen to notice behavioral changes, including the ups and downs in behavior:

She’s all over the place with her moods. She never used to get angry before, but now there are outbursts of anger that I’ve never seen before until recently. But then she can change within a few minutes and she’s usually a happy-go-lucky joking around kind of person. (P06)

Caregivers described stressful scenarios of daily living including an ever-changing array of symptoms and challenging behaviors exhibited by the PWD:

Every now and then she gets feisty and threatens to throw her cereal bowl at you…it’s frustrating. It makes me anxious. You wonder what’s gonna happen next. She hasn’t been prone to wandering…everything’s a question. I wake up…OK…now what’s going to happen today? (P09)

In attempts to manage such challenging behaviors caregivers cited examples of familiar patterns and daily rituals to minimize stressful situations in managing a changing and often unpredictable schedule. Persons with dementia accompanied their caregivers as they ran errands, kept appointments, scheduled fun outings, visited favorite restaurants, and established familiar bedtime routines. One daughter caregiver described how she plans an entire day for her mother who has dementia and includes her father in the activities as well:

I usually cook them a nice breakfast. That’s our nice family day. And then we do something fun. We go to a movie and we go out to eat. During the day, trying to get my mom to do some type of exercise, walking with her, just sitting and talking with her. … I have different bags of activities. I have one bag of puzzles. Like, I have our pictures made into puzzles, different sizes so that she can recognize, “Okay, I’m making a puzzle of my family.” So, I have a bag of puzzles. I have a bag of coloring. I’m going to get them both started on scrapbooking, just to try to help with that. … doctor’s appointments, getting my mom out to the doctor’s appointments, making sure everything’s set up. (P04)

Caregivers reported trying to go with the flow; taking one day at a time as they adhere to familiar patterns and daily rituals to minimize stressors for themselves and the PWD. Participants described ways they manage the ambiguity of their demanding and exhausting schedules as they care for their PWD at home:

I assist him with walking because his right leg gets weak at times. When we’re out, we’d walk the dog, and we go to church. I don’t know that he gets much out of church but the people are wonderful, so I do insist that we go to church. (P11)

Caregivers had much concern about planning for an unclear and uncertain future. One caregiver shared that previous life strategies were not of any help:

I don’t know how to describe it. It’s like planning for a vacation – you know what you’ve got to do – this isn’t like that. I don’t know what to expect, you know? This is something you can’t plan for – you can’t possibly plan for anything on this. I’ve always been very organized and very much of a planner. This is throwing me off. (P8)

All caregivers described their feelings of uncertainty regarding their ability to care for the PWD at home in the future. This was especially true regarding doubts about their own health and the possibility of their family member or even both of them needing institutional assistance or care:

I just take it day by day, and I don’t have any plans…maybe we would have to go to assisted living. But again, I don’t know if we can afford that…if something happens to one of us, what would happen next? What would we do? I think about the future and I get so upset. (P1)

The Sense of Loneliness

Caregivers expressed feelings of loneliness as part of their caregiving experience. More specifically, this theme captures how caregivers described feelings of losing interaction with the PWD and being separated or isolated from others, excluded from events and family gatherings, sad, and bored.

Caregivers expressed one aspect of feeling lonely related to a loss of interaction with their loved one as the PWD lost an awareness of their caregiver and environment, developed an inability to communicate, and lost interest in previously shared activities. Thinking about becoming disconnected from their family member “as he fades away” (P8), felt lonely. Some caregivers described other family members who were not only not supportive, but very rarely made contact with the caregiver or PWD: “He has two sons. I’m lucky I hear from them every two months.” (P10)

One caregiver’s first response to “How does it feel to be the caregiver of someone who has dementia?” was: “Lonely. My major thing is exclusion. Being excluded.” (P10) Exclusion from events and being shunned by other family members seemed to precipitate many of these lonely feelings. This caregiver described a social event both previously attended together, but now were not receiving invitations:

…when we used to go a lot of places with people, we don’t get invited anymore. And I blame it on that because he doesn’t talk much. …and if he says something then I see their eyes roll. I think they’re uncomfortable. Sometimes I’m uncomfortable when I see the eyes rolling. But I guess that’s the biggest thing, being excluded from everything.

Feelings of loneliness were complex and many times were accompanied by feelings of sadness. As one participant shared:

Sadness in my heart…you lose the connection…. You lose the emotional connection (pause) the affectionate connection. I can’t talk with him, he doesn’t understand. I miss being able to communicate with him.” (P11)

Many thoughts were intertwined when expressing their loneliness such as the loss of interaction with the PWD, desire to be more active together, and feelings of boredom. For example,

I’m bored. I would like to do more things…a book talk, marine center, go down to the seashore. He has no desire to do any of that (pause) there’s no interest on his part. But, there’s no interaction about “well, let’s do this or let’s do that…” I could read so many books, crochet so many prayer shawls. I just sit there sometimes…I take naps…. (P1)

Complexities of Frustration

Frustration, ranging from extreme to mild, was a prevalent theme. Extreme frustration for caregivers had a tone of exasperation over the role and possible future financial costs of care. Whereas, mild frustration had a tone of weariness. Those feeling this milder frustration tended to have some sort of support system, either family, professional, or both.

As an example of extreme frustration, one caregiver was frustrated with how she perceived her new role as the caregiver. She compared the previous interrelationship with her husband to be a more singularly responsible role now:

So, it’s a frustration of what I perceived the normal living, where we would do things together. We traveled together before all this. I hate to use the word frustrating, but it’s just very frustrating to try to be the cheerleader all day long, because some days I have bad days too. So, it’s just a whole—There’s that word frustrating again. (P1)

Discussions about finances also illustrated feelings of extreme frustration. Notably, one caregiver framed the conversation in terms of asking questions, a tactic that effectively drew in the interviewer into the caregiver’s feelings of frustration:

Would we be able to afford to have anything (now)? I only thought of future care as money. That’s my primary concern. That’s –And, if we would be able to afford, would it be just for one person? Or, is there enough for both of us? I mean, we’ve saved our money, but how much is enough to save? (P1)

Mild frustration was also expressed by caregivers. One caregiver, who also worked as a part time hairdresser, discussed ‘having to’ do certain care activities, but was resigned to providing her husband’s care:

Well I have to provide--I have to assist him showering, brushing his teeth, dressing. So, I drive him everywhere. I keep track of all his appointments and I just totally take care of him. I’m just gonna do what I have to do and find out and research. Situations around communication could be mildly frustrating for some caregivers:

He doesn’t know who I’m talking about sometimes. So, it gets frustrating or if he’s heard it before he doesn’t wanna hear it. I mean, the other day I told – how many times did I say. Listen, listen, listen. So yeah, yeah, yeah, okay, all right (he says). So those are the little things, they’re not big. You can’t even tell them to somebody because they’re so stupid and minor, but it’s annoying.

Overall, mild frustration, rather than extreme frustration, tended to be discussed in the context of having professional and family supportive networks. One caregiver’s husband received Veteran benefits consisting of care coordination, counseling and physical therapy, and also had adult children paying for daily home health services. While grateful for those supports, she still expressed a mild frustration with her husband’s repetitive behaviors and anticipated she would be experiencing increasing frustration over time.

We both have the kind (of shoes) with the Velcro and it’s a big part of his day - is taking them off and putting them back on - and he’ll end up with my shoes on him. He and I wear the same size. …I went to a counselor right in the beginning, and I said “here’s your job,” I don’t need you yet, but I’m going to need you, … So it worked – it worked; it was great. She was really – all she did was listen to me, I know I’m not playing a game I’m going to win - but we’ll have fun playing it anyway. (P7)

On the Other Side of the Spectrum

While all of the caregivers interviewed expressed negative feelings related to their caregiving, some also noted positive feelings and indicated that it was possible to experience some positive feelings in the midst of the devastating diagnosis of dementia. The major feelings expressed included gratefulness and thankfulness, self-satisfaction, happiness and joy, and relief.

Caregivers shared feelings of gratefulness and thankfulness for having their family member with dementia in their life for a longer period of time than anticipated, and for the care and assistance offered by healthcare providers in the home.

Gratefulness, as a deep appreciation of a benefit, was expressed in this way by one caregiver:

…we’ve had wonderful service come in…and they’re very supportive people, that whole field of health, that has been marvelous. I just think thanks to all those people who have helped me along the way. (P1)

Thankfulness, as an expression of appreciation, was conveyed by another caregiver:

Having this time with him (pause) I think I’ve had a lot longer than a lot of people…I still have him; he can do stuff most people can’t at eight years into this. (P11) A feeling of self-satisfaction was described by two caregivers:

I feel very fortunate that I can be the caregiver. My mom was a caregiver…I like to think I took after her… (P05) So, there’s always that self-satisfaction and doing what I should be doing, taking care of her. (P06)

A feeling of self-satisfaction was described by one caregiver who was proud of learning skills and increasing her ability to cope:

I know the next few years are gonna be the hardest years of all of this, and I just take one day at a time. … I was devastated. I didn’t think I would ever be able to do it…I kinda settled into it and thought, well, I’m just not gonna let this get the best of me. I’m just gonna do what I have to do. I’m just gonna do what I have to do and find out and research and I did,... (P11)

Caregiver joy and happiness were feelings experienced by caregivers when they observed instances of pleasure from their family member either through verbal reactions or facial expressions. Examples included:

It just brings me joy to see him happy when the kids come over. And he just wants to be with me and that makes me happy. (P11) She makes me laugh every day. She tells me she loves me every day. She thanks me every day. (P06)

Relief from stress and devastation was expressed by several caregivers. Situations that supported this feeling of relief included having support, accepting their current situation, taking action, and having the ability to live in the present. Having support was emphasized as very important and described as coming from family, friends, church, other caregivers, and professional healthcare providers.

If I need to go out to lunch with my sister, my daughter is here for me…so I do have some relief. (P11) …I joined in their caregiver group…They told me who to see (pause) the social worker (pause) she listened (pause) we started with the primary care doctor (pause) whose listening skills are wonderful. (P07)

Acceptance of the situation in the context of living in the present and taking action by being proactive was discussed by one caregiver as being helpful in reducing her feeling of devastation and increasing her ability to cope.

…I just take one day at a time. I don’t look into the future, I don’t look what’s gonna be, I look at what it is now and I deal with that. In the beginning, I was devastated. I didn’t think I would ever be able to do it..I..thought..I’m just gonna do what I have to do and find out and research. And I did, and a lot of support from the family and …the church has helped me a great deal. (P11)

Experience with Palliative Care

This study aimed to understand these caregivers’ lived experience with caring for a PWD, including being open to if that experience involved palliative care. Results indicated that six of the 11 participants had no knowledge of palliative care. No participants had experience with PC. However, five participants mentioned that they had heard the phrase ‘palliative care’. When these five caregivers were asked to describe PC, most described the primary tenets of hospice care. One caregiver even switched from the phrase PC to the term ‘hospice’ midpoint while responding:

It’s – my version of what it is, is that you want to keep them safe, and out of pain, and not agitated – but beyond that – you’re not going to make them well, and so you back off of – so once you get hooked up with hospice, you don’t call 9–1-1 or anything. You call hospice, and – so then, it’s out of our hands – but that’s okay. (P7)

She also shared what her husband’s physician had told her about ‘palliative care’, which did not appear to reflect the tenants of PC that can be followed earlier in the course of an illness:

Palliative care – yes, and the primary care guy brought it up a few years ago, and he said, “You’re gonna notice that I’m not gonna be ordering a lot of tests.” He said, “I won’t order tests that I’m not willing to follow through with surgery, or whatever would be necessary,” and so I think I have a full understanding of it. (P7)

Discussion

The current study demonstrates how dementia presents unique challenges to family caregivers and how those challenges contribute to the caregivers’ feelings about their role; in other words, their lived experience. A number of other studies support this study’s conclusion regarding the challenges of caregiving highlighting the numerous aspects of caregiver burden. These include PWD disruptive behaviors, the need for information about the disease and its trajectory, and the need for support (LaManna, Unruh, Chisholm, Pericles & Fotovvat, 2020; Miller, Whitlatch, Lee & Caserta, 2019; Lindauer & Harvath, 2015; Riedel, Klotsche & Wittchen, 2016; Spigelmeyer & Schreiber, 2019). In this current study, caregivers expressed undesirable feelings of uncertainty, loneliness, and frustration, as well as some positive feelings such as gratefulness, thankfulness, joy and self-satisfaction.

Uncertainty was reported regarding concerns about navigating the unfamiliar waters of dementia symptoms (severity and progression), managing unpredictable behaviors, and planning for what caregivers considered to be an unclear future. Other studies have also demonstrated caregiver uncertainty (Chan, Phang, Glass & Lim, 2019; Czekanski, 2017), including limited knowledge about the disease. This can be especially problematic when health care professionals erroneously believe the caregivers are well informed (Riedel et al, 2016).

In addressing uncertainty from a theoretical perspective, Mishell (1990) proposes that when any illness-related uncertainty is seen as a threat to the status quo, that uncertainty will be perceived as a danger. Especially if the feeling of uncertainty is unclear, as in this study regarding the future, the caregiver may make any number of inaccurate inferences and inadequate decisions. For example, in this study uncertainty about the progression of the disease was prevalent, and planning for future institutional care such as assisted living. More research is needed, but it is known that accepting and adapting to a new and evolving situation while becoming aware of one’s feelings of uncertainty has helped caregivers perceive a greater sense of control over their situation (Chan, Phang, Glass & Lim, 2019; Czekanski, 2017).

Loneliness, in the context of losing connections and interactions with others, was common in the current study and has also been recognized across other caregiver studies (Chan, Phang, Glass, & Lim, 2019; Czekanski, 2017). Like other studies, caregivers discussed losing connections and the ability to communicate with their loved one. Feelings of sadness and boredom accompanied this loneliness. An additional aspect of loneliness in this study was uncovered in the context of exclusion from events and gatherings by family and friends. Some studies have described this situation as more self-imposed, wanting to avoid the stigma associated with dementia. However, in the current study caregivers were very clear that they had a desire to continue to participate in events with the PWD and that they were being excluded by others. Boss’ theory of ambiguous loss addresses caregiver loss in terms of diminishing social interaction, as well as loss of the cognitively declining PWD (Boss, Caron, & Horbal, 1988). This theory may be helpful in designing interventions to ameliorate loss in the future.

The complexities of frustration as shared by participants ranged from extreme to mild in the current study and highlighted both ongoing worries about the future as well as a weariness about their situations. Interestingly, most caregivers connected this lesser form of frustration to having some family or professional support. More research is needed to better understand the significance of the range of frustration and if there are any causal relationships between the degree of frustration and untoward outcomes such as stress or depression.

This study clearly demonstrated positive aspects of the lived experience of caregiving. Specifically, participants shared feelings of gratefulness, thankfulness, joy, as well as aspects of self-satisfaction. These feelings were most frequently underpinned by the idea that the caregivers were helping the PWD. When caregivers observed any sort of acknowledgement from the care recipient, they were especially happy. Linderdau and Harvath (2015) have stated that caregiver characteristics such as personality and functional status present prior to the caregiver role may determine how caregivers interpret the meanings of their role.

Feelings of joy and happiness also accompanied what appeared to be an increasing self-efficacy as caregivers shared how they had mastered new care activities. This has been demonstrated in other studies with evidence that mastery has contributed to less caregiver burden and depression (Chan, Phang, Glass, & Lim, 2019; Chan, Glass, Chua, Ali & Lim, 2018). Recognizing that many of the current study’s caregivers also expressed uncertainty about the future, Mishel (1990) offers an explanation that living with continuous uncertainty can lead to personal growth as people try new strategies over time in order adapt to their situations.

Although not all caregivers were familiar with the term palliative care, their experiences support the need for PC services. Dementia, a neurodegenerative disease, can span over a 10-year period with devastating declines in cognitive and functional status. Compromises arise early on in dementia necessitating support for PWD and caregivers alike. This current study highlights three areas of concern shared by participants: uncertainty, loneliness, and frustration; all of which might be ameliorated by the use of PC services. A fourth theme, representing positive aspects of the caregiving experience represents areas of caregiver strength that could be leveraged to the advantage of caregivers by those working in PC. It is recognized that regional differences exist across the US in terms of PC services and this study’s findings highlight both professional and caregiver lack of knowledge about PC in one community.

Limitations

Three limitations restrict the generalizability of study findings: small sample size, restricted participant characteristics (racial and ethnic background and gender), approach to recruitment. Methodologically, the sample size was adequate; however, it is recognized that the study findings may be unique to this specific study’s sample. All study participants were white Caucasian and 10 out of the 11 participants were women. Therefore, including racial and ethnically diverse as well as additional male caregivers would allow for the possibility of a more diverse representation of caregivers’ experiences in future studies. The approach to recruitment began by contacting members of a faith-based caregiver support group and it is acknowledged that belonging to that group may have influenced those caregivers’ lived experiences.

Clinical Nursing Implications

Historically, the practice of gerontological nursing has demonstrated to be an important contributor to patient and caregiver quality of life (Brody, 2020). This study’s findings point to a number of important implications for nurses. To improve the quality of life for caregivers of PWD, the first recommendation is to expand the PWD assessment to include a brief assessment or screen for the caregiver’s needs. In one recent study 41.2% of caregivers of PWD reported never being asked if they needed assistance (Wolff, Friedman, Mulcahy & Kasper, 2020). Next steps may include providing caregivers with education and resources that include accurate, appropriate information from reliable sources in order to weave a safety net that will diminish their uncertainty about the many decisions related to finances and ongoing care at home or in a future care facility. Such efforts do not have to be extremely time consuming. Caregiver education and resource consultation has been efficiently and effectively delivered by nurses via computers, phones and video phones, as well as in day care settings (Cristancho-Lacroix, Wrobel, Cantegreil-Kallen, Dub, Rouquette & Rigaud, 2015; Czaja, Loewenstein, Schulz, Nair & Perdomo, 2013; Gitlin et al, 2019; Steffen & Gant, 2016; Wilz & Soellner, 2016).

In addition, nurses can take an active role partnering with caregivers in designing and participating in more novel support groups. For caregivers of PWD who may not be able to leave their loved one on a regular basis to attend an in-person support group, telephone (Cho, Luk-Jones, Smith & Stevens, 2019; Winter & Gitlin, 2006) or web-based support groups (Duggleby, et al, 2018) may provide not only emotional and educational support, but also socialization without the stress of searching for respite care needed to attend face-to-face meetings.

Nurses can also foster caregiver support groups that include PWD attendance. This approach allows both caregivers and PWD to interactively socialize with others, creating a space with less stigma. This would increase socialization for all and reduce feelings of exclusion, loneliness and frustration. And, no matter the venue, nurses should be encouraging caregivers to talk about what brings them pleasure and reinforcing expressions of positive feelings.

Finally, this study strongly indicates that nurses should not assume that caregivers are knowledgeable about palliative care services. Lack of knowledge may result in caregivers not pursing palliative care in the earlier stages of dementia. Nor should it be assumed that palliative care services are available in every community. And, when there is confusion among health care professionals as to the differences between palliative care and hospice care, as in this study, the PWD may be being referred only to hospice care in the last stage of disease.

Conclusion

This qualitative study investigated different aspects of the caregiver lived experience. While there are limitations, the findings can inform nurses by increasing their awareness of the challenges caregivers experience that trigger feelings of uncertainty, loneliness, and frustration. Caregivers do find happiness and joy in their role at times, and are proud of the caregiving skills they master along their journey. Finally, there should be no assumption that caregivers or their PWD are the benefactors of PC services or even that caregivers understand what those services are in order to request them. This finding underscores the patient advocacy role for all nurses caring for persons with dementia and their caregivers.