“We Moved Her Too Soon”: Navigating Guilt Among Adult Child and Spousal Caregivers of Persons Living with Dementia Following a Move into Residential Long-Term Care

Abstract

Guilt is a complex and multifaceted emotion navigated by many family caregivers. Guilt is sometimes experienced following a transition into a residential long-term care facility, even when the move is necessary given high care needs related to Alzheimer’s disease and related dementias. This mixed methods study identifies and compares areas of guilt most frequently experienced by spouse and adult child caregivers (N=83) of a family member with dementia following transition into residential long-term care. Nearly half of caregivers reported experiencing guilt from their care recipient, other family members, or facility staff. Quantitative analyses explored variables that predict heightened feelings of guilt, and qualitative thematic analyses provided rich insight into subjective experiences of guilt. Person-specific and situational characteristics influenced caregiver guilt, including level of involvement in care, frequency and quality of visits, and perceptions of the residential long-term care facility. We identify specific opportunities for tailored couple and family psychology interventions including communication strategies, decision-making approaches, focusing on positives, psychoeducation, self-forgiveness exercises, stress management and self-care activities, and validation. The present work informs how counseling interventions can provide practical support by highlighting specific clinical mechanisms that help to alleviate common facets of caregiver guilt following a transition into residential long-term care. Critically, we distinguish variation between spouses and adult children to design treatment plans that best support clients who are caring for a person living with dementia in residential long-term care.

Background

Family and friends provide the majority of long-term care to older adults (Doty et al., 1985) and are the backbone of long-term care provision to older persons in the U.S. (Hoffman & Zucker, 2016). Over half of people with Alzheimer’s disease and Alzheimer’s disease-related dementias (ADRD) are in residential long-term care (RLTC) facilities by the end of their lives and 42% of all residents in RLTC have some form of ADRD (Gaugler et al., 2019). Spouses (7.8–17.2%) and adult children (52.2–64.9%) are the primary caregivers to those with ADRD (Kasper et al., 2015). Given the extended morbidity of ADRD (Gaugler et al., 2019), spouses and adult children undergo major changes in their caregiver roles as family members living with ADRD transition to RLTC, providing a rich opportunity for couple and family psychological interventions.

Residential long-term care is a class of settings including assisted living facilities, nursing homes, and memory care units (Gaugler, 2005). Though most people prefer to remain independent in the community as long as possible (Binette & Vasold, 2018), transitions to RLTC facilities occur because of increased health problems, care needs, and caregiver burden (Zissimopoulos et al., 2014). A meta-synthesis of family caregivers in this transition found that even when they believe that transitioning their care recipient to RLTC is the best thing for them, caregivers can still report feeling that they have abandoned or betrayed their care recipient, resulting in feelings of guilt (Pritty et al., 2019).

Family-focused psychological interventions are often employed to help caregivers manage stress and negative feelings (Griffin et al., 2013). Family interventions for dementia caregivers in the community, including Resources for Enhancing Alzheimer’s Caregiver Health (REACH; Eisdorfer et al., 2003) and New York University Spouse-Caregiver Intervention (NYUCI; Mittelman et al., 2004), have been found to effectively help ease caregiver stress and boost caregiver well-being. Family interventions have also been created specifically for dementia caregivers following RLTC placement to address these issues and feelings of guilt: Family Intervention: Telephone Tracking-Nursing Home (Davis et al., 2011) and the Chronic Grief Management Intervention (Paun et al., 2015). Caregiver guilt might be reducible through intervention (Brooks et al., 2018), but the unique and shared histories of people living with ADRD and their caregivers make their guilt complex. Caregiver guilt may originate from multiple sources, including other family members, RLTC facility staff, and the care recipient. Experiences when visiting their care recipient in RLTC and qualities of the facility and staff itself may add to or lessen negative emotions. Knowledge of the multifaceted lived experiences of spousal and adult child caregiver guilt can inform evidence-based practices to help them cope with or reduce guilt following the transition of their care recipient living with ADRD into RLTC.

This mixed methods study explores qualitative and quantitative data from a parent randomized controlled evaluation (the Residential Care Transition Module, “RCTM”; Gaugler et al., 2020) to achieve the following aims: (1) identify and compare areas of guilt most frequently experienced by spouse and adult child caregivers following their care recipient’s transition to RLTC. (2) explore caregiver characteristics that predict heightened feelings of guilt, and (3) identify how a counseling intervention can provide practical support to help alleviate caregiver guilt following this time of transition.

Method

The RCTM is an ongoing randomized controlled trial that offers support to families of persons with dementia living in RLTC facilities. The intervention was developed using the Stress Process Model for Residential Care (SPM-RC) as a conceptual framework (Gaugler et al., 2020; Whitlatch et al., 2001). The SPM-RC explores the influence of personal and organizational stressors on care recipient transitions to long-term care and the caregiver’s subsequent emotional and mental health outcomes.

As described in the protocol (Gaugler et al., 2020), the study enrolled family caregivers transitioning their care recipient with a physician diagnosis of ADRD to RLTC. Caregivers were English-speaking, 21 years of age or older, and not participating in one-to-one counseling or related services specific to caregiving. Following completion of the baseline survey, caregivers were randomly assigned to receive either the RCTM intervention (n=120) or usual care (n=120). Follow-up surveys were administered at 4-, 8-, and 12-months. The study is approved by the University of Minnesota Institutional Review Board (#1511S80406).

Counseling Intervention

The RCTM counseling intervention provided support and skills-building to help caregivers adapt to their care recipient’s transition to long-term care. Primary caregivers participated in counseling and additional supporting family members were included at the primary caregiver’s request. A trained transition counselor (TC) delivered the intervention during 6 formal phone or secure Web-based video sessions over 4 months: the first 3 sessions weekly, the final 3 sessions monthly. Optional ad-hoc sessions were offered for the duration of study involvement (12 months). Intervention sessions ranged from 10 to 160 minutes (mean=81.3 minutes, SD 28.5 minutes) and ad hoc sessions ranged from 5 to 90 minutes (mean=12.3, SD=11.9 minutes).

The semi-structured intervention was tailored to the needs and preferences of individual caregivers. The TC offered session topics including guilt, grief, conflict resolution, stress management, and psychoeducation. The sessions centered on building therapeutic rapport with the caregiver and providing a safe environment to explore stressors, caregiving roles, and family dynamics relating to quality of life for the caregiver and care recipient. The TC helped the caregiver explore their guilt or shame around placement, perceptions of their care recipient’s reaction to the transition, and life in RLTC. The TC facilitated examination of familial traditions of giving care, ideas of abandonment following placement, and societal expectations for caregiving relationships and involvement. The TC prompted caregivers to reframe their care recipient’s placement as a valid care option and reminded them that caregiving does not stop after placement but entails new roles for the caregiver. The TC encouraged the caregiver to reflect upon their goals and values surrounding their care recipient’s care and to evaluate how the current RLTC setting might meet those.

Mixed Methods Design

The convergent parallel mixed methods design (see Supplemental Material) included data from spouse and adult child caregivers in the intervention group who completed baseline and 4-month surveys by April 2019 (n=83). The sample was limited to the intervention group because qualitative analysis relied on notes from RCTM counseling sessions. Though data collection continued at 8- and 12-months, the 4-month interval was selected for completeness and consistency across participating caregivers. The quantitative and qualitative data were collected and analyzed separately and then paired side-by-side for comparison. The validity of the findings is enhanced through mixed methods triangulation: identifying where and how the results from each data type converge or diverge. Results were iteratively discussed in order to validate conclusions (Creswell, 2015).

Quantitative Measures and Analysis

Context of care.

Baseline variables include caregiver and care recipient demographics, duration and extent of the care recipient’s memory problems, Medicaid status, amount of physical help needed (i.e., activities of daily living [ADLs] and instrumental activities of daily living [IADLs]), and dementia-related behaviors using the Revised Memory and Behavior Problems Checklist (RMBPC). Cognitive impairment was assessed by an average of 8-items (e.g., remember recent events) where higher scores indicate greater difficulty (memory impairment; Pearlin SPM measure; α=.86; Aneshensel et al., 1995; Pearlin et al., 1990).

Caregiver Residential Facility Perceptions and Involvement.

Caregivers responded to “How upsetting is it for you to see your relative in this residential care setting?” (0=Not upsetting, 1=Somewhat upsetting, 2=Very upsetting). They rated their perception of the facility’s quality on a 0 to 10 scale, where 0 was the worst care possible and 10 the best care possible. The 28-item Family Involvement Interview (FII) asks caregivers which activities they performed during visits (e.g., assisted going to the bathroom; yes/no). Caregivers enumerated their visits to the facility in the past month and their typical length (in minutes).

Caregiver feelings of guilt.

Participants reported whether they were made to feel guilty specifically by their care recipient, other family members, or RLTC facility staff (from Whitlatch’s SPM-RC measures; α=.65 to .80; Whitlatch et al., 2001; yes/no). The survey also assessed caregiver emotional status and support (see Supplemental Material).

Analysis Plan.

Spousal and adult child baseline context of care, support and emotional status, residential care perceptions and involvement, and feelings of guilt measures were compared using Welch’s t-test and ꭕ² analyses as appropriate. Several of the t-tests demonstrated unequal variances, thus the use of Welch’s t-test, which is robust to unequal variances (Delacre et al., 2018). A multivariable logistic regression model explored why guilt from other family members varied by caregiver role (spouse vs. adult child). Predictors were statistically significant bivariate correlates: caregiver (spouse or adult child, age, marital status, number of living children, employment status, and number of visits to RLTC in the past month) and care recipient characteristics (age, gender identity, race, marital status, number of living children, education). Analyses were performed using SPSS v25 software.

Qualitative Analysis

Qualitative data were obtained from detailed case notes from each counseling session, which provided direct caregiver quotes for analysis. Case notes were organized in NVivo 12 (1,396 pages) and data were thematically analyzed using Braun and Clarke’s (2006) six steps of thematic analysis. The first author (TLS) read all case notes, and authors CP, HM, RB, JF, CR and ZB read a subset to familiarize themselves with the qualitative material (step 1) and develop initial codes (step 2). Next, authors coded the same subset of case notes and convened to compare interpretations, points of divergence, and clarify and refine the coding framework. Each author coded a portion of the case notes to identify primary material for themes (step 3). TLS reviewed all authors’ coding to ensure consistency and completeness. Themes were evaluated (step 4), refined, and named (step 5) to ensure that research aims were adequately addressed. The qualitative results presented are a summary of themes and analyzed material (step 6).

Results

Quantitative Results

Of the 83 eligible caregivers from the intervention group, 25 were spouses (30.1%) and 58 were adult children (69.9%). Spouses were more likely to be older, married, and not employed than adult child caregivers. Adult children tended to take care of their mothers who were, on average, older than spousal care recipients. Support and emotional status measures did not differ between spouses and adult children. Of facility perceptions and involvement, only the number of visits to the facility was significantly different. Spouses visited more frequently than adult children, with a mean difference of 8.7 visits per month (Table 1).

Table 1.

Baseline Demographics, Residential Care Facility Perception/Involvement, and Guilt Sources for Spousal and Adult Child Caregivers and Care Recipients (83 Dyads)

	Summary	Spouse	Adult Child	p-value
Caregiver Characteristics
Age in years, M (SD)	63.0 (10.4)	73.9 (9.3)	58.9 (7.6)	<.001
Female, N (%)	68 (81.9)	18 (72.0)	50 (87.7)	.082
White, N (%)	82 (98.8)	24 (96.0)	58 (100.0)	.125
Married, N (%)	63 (75.9)	24 (96.0)	39 (67.2)	.005
Number of living children, M (SD)	2.0 (1.6)	2.6 (1.7)	1.8 (1.6)	.037
Bachelor’s degree or higher, N (%)	66 (79.5)	17 (68.0)	49 (84.5)	.088
Above median income, N (%)a	49 (59.0)	11 (45.8)	38 (67.9)	.064
Employed, N (%)	40 (48.2)	4 (16.0)	36 (62.1)	<.001
	Care Recipient Characteristics
Age in years, M (SD)	84.2 (8.4)	77.4 (7.6)	87.2 (6.9)	<.001
Female, N (%)	55 (66.3)	7 (28.0)	48 (82.8)	<.001
White, N (%)	78 (94.0)	21 (84.0)	57 (98.3)	.012
Married, N (%)	32 (38.6)	23 (95.8)	9 (15.8)	<.001
Number of living children, M (SD)	3.5 (2.6)	2.6 (1.7)	3.8 (2.8)	.048
Bachelor’s degree or higher, N (%)	32 (38.6)	17 (70.8)	15 (26.3)	<.001
Above median income, N (%)a	44 (53.0)	16 (66.7)	28 (53.8)	.293
ADLs, M (SD)	6.2 (3.7)	6.5 (3.4)	6.1 (3.9)	.646
IADLs, M (SD)‡	10.9 (2.9)	9.6 (4.7)	11.5 (1.2)	.065
RMBPC frequency, M (SD)	2.2 (0.9)	2.1 (1.1)	2.2 (0.8)	.789
Cognitive impairment, M (SD)	3.4 (0.6)	3.6 (0.8)	3.3 (0.5)	.302
Medicaid, N (%)	25 (30.1)	6 (25.0)	19 (33.3)	.458
Memory Characteristics in months, M (SD)
First noticed memory problem	74.5 (42.7)	75.8 (28.6)	73.9 (47.6)	.861
First helped CR 63.0 (36.6)	57.8 (22.1)	65.1 (41.2)	.298
Time since seen doctor. for memory problem 55.4 (35.0)	65.2 (25.3)	50.9 (38.1)	.141
Time since CR moved to RLTC facility	17.7 (16.0)	15.6 (16.3)	18.6 (15.9)	.429
Caregiver Residential Care Facility Perceptions and Involvement
Upset CR is in facility	1.4 (0.9)	1.4 (1.0)	1.3 (0.9)	.563
Perceived quality of facility (0–10)	7.8 (1.6)	8.1 (1.7)	7.7 (1.6)	.355
Family Involvement Interview (FII) sum	20.3 (3.1)	19.8 (3.1)	20.5 (3.2)	.354
Number visits to facility past month	13.6 (9.1)	19.7 (9.8)	11 (7.5)	<.001
Typical visit length, minutes	144.1 (201.6)	197.6 (310.4)	123.4 (137.5)	.290
Caregiver Guilt Sources, N (%)b
Care recipient made them feel guilty	30 (36.1)	7 (28.0)	23 (39.7)	.311
Other family made them feel guilty	18 (21.7)	1 (4.0)	17 (29.8)	.009
Staff made them feel guilty	7 (8.4)	3 (12.0)	4 (7.0)	.457

Note

^aMedian incomes were ≥60k for caregivers and ≥30k for care recipients

^bMissing data are present in caregiver guilt sources.

ADL = Activities of Daily Living; IADL = Instrumental Activities of Daily Living; RMBPC = Revised Memory and Behavior Problems Checklist (1=not at all difficult, 2=just a little difficult, 3=fairly difficult, 4=very difficult, 5=cannot do it all); RLTC = residential long-term care; CR = care recipient; SD = standard deviation; M = mean; N = number of respondents.

Approximately half of the participants (46.3%) reported their care recipient, other family members, and/or RLTC facility staff made them feel guilty. Only feeling guilt from other family members differed by caregiver role (Table 1): Adult children were more likely to have reported other family making them feel guilty (29.8%) than spouses (4.0%). In our multivariable model, no variables significantly predicted guilt from other family members after controlling for CG and CR characteristics (Table 2), suggesting the association between caregiver role and guilt may be mediated by variables unmeasured in our analysis.

Table 2.

Predicting Spousal and Adult Child Caregiver Guilt from Other Family

	Estimate	SE	Wald	OR	95% CI	p-value
Constant	−3.27	5.49	0.35
Caregiver Characteristics
Relationship with CR (ref: spouse)	0.20	2.28	0.01	1.22	(0.01, 107.45)	.929
Age	−0.11	0.07	2.75	0.89	(0.78, 1.02)	.097
Married	0.16	0.89	0.03	1.17	(0.21, 6.65)	.857
Number living children	−0.02	0.23	0.01	0.98	(0.63, 1.54)	.937
Employed	1.44	0.95	2.31	4.22	(0.66, 27.01)	.128
Num. visits to facility past month	−0.07	0.06	1.48	0.93	(0.84, 1.04)	.225
Care Recipient Characteristics
Age	0.13	0.07	2.87	1.13	(0.98, 1.31)	.090
Female	−1.71	0.89	3.74	0.18	(0.03, 1.02)	.053
White	0.08	0.13	0.32	1.08	(0.83, 1.4)	.575
Married	−1.21	1.88	0.42	0.30	(0.01, 11.81)	.519
Number living children	−0.21	0.99	0.05	0.81	(0.12, 5.63)	.830
Bachelor’s degree or higher	0.64	1.00	0.41	1.90	(0.27, 13.54)	.523

Note. CR = care recipient; OR = Odds Ratio; SE = Standard Error

Qualitative Results

Qualitative analysis of case notes indicated that guilt experienced by caregivers is complex and multifaceted. Most caregivers brought up multiple and varied struggles with guilt throughout their counseling sessions. Thematic analysis generated four areas of guilt most frequently experienced by family caregivers: (1) transition to RLTC facility, (2) caregiver involvement, (3) visits, and (4) facility context (Table 3). Below we describe protective and risk factors for feeling guilt and compare the experiences of adult children to spousal caregivers. We then identify opportunities for intervention to help alleviate guilt in these situations (Table 4).

Table 3.

Caregiver Guilt: Exemplar Quotes from Spouses and Adult Children by Theme

Theme	Sub-Themes	Exemplar Quotes
(1) Transition to RLTC Facility	Decision to move	I experienced a lot of guilt at the beginning of this experience because I thought mom would go into assisted living, not a dementia unit right away. Did I try hard enough, did I think of everything? It still comes up with me especially when I see people who are home-bound but are successfully living at home. (daughter, 68y) The longer he’s there I know I’ve made the right decision. Because of the care he needs, I know he can’t do it. (wife, 77y)
	Timing of the move	I still feel a little guilty that we made the decision to move her when we did. I keep second-guessing myself. If we had moved her earlier, would she have adjusted better? I need to stop doing that. (daughter, 68y)
		I think the only guilt I feel is when I go down and see him and he is better than when he was at home. I feel like I should have kept him at home longer. But then I leave and the reality hits that I had to [move him]. (wife, unknown age)
	Others’ perceptions of the move	Nell thinks her brother is mad at her. She believes he wasn’t ready for her mom to go to the long-term care center. Nell thinks her brother felt her dad should have done more to keep her home. (daughter, 58y) I have had someone say ‘you should be doing this or that,’ but I just think, ‘You don’t know what you’re talking about, you haven’t been through this.’ (husband, 62y)
	Adjustment of care recipient	When I visit her she seems happy and good. However I wonder how much she realizes about where she is. She thinks it’s her condo, and I just go along with her. (daughter, 54y) He’d love to come home. When he’s acting wonderful it’s all I can do to not pop him in the car and bring him home. (wife, 70y)
(2) Caregiver Involvement	Limits of involvement in care recipient’s care	I was having several small health issues so it’s a lot to get all of those appointments in… Even with an alternating schedule I feel like I’m not doing enough. It’s that guilt. (daughter, 54y) I have not been a very good wife, I haven’t been over there hardly at all [this past week]. My daughter is moving in this coming weekend so I have been cleaning closets for them. (wife, unknown age)
	Level of involvement in care recipient’s care	Maybe [my sister] reads the emails about mom’s condition. I guess if she can live with that, that’s great…Oh, must be nice to just run off and not think about mom. I don’t want to be the one who’s struggling, and maybe they don’t want to admit it either. But none of us really know what each other is doing when it’s their weekend. I know that the others just go on their weekend, not during the week. So maybe I need to let that go. (daughter, 54y) I think my son is a little more standoffish and I don’t know if he likes to admit that his dad has Alzheimer’s. He’s involved in what we do, but I think it’s harder for him than my daughter. (wife, 73y)
	Reasons for involvement in care recipient’s care	My concern is for my kids, I don’t want them to feel that because I’m spending this much time with my mom that they have to. To impress upon them that it’s individual. She cried and then continued, It’s my choice, it’s not an obligation. (daughter, 62y) No matter what, I’m sticking with this til the end, no matter how crappy it is. It’s the hardest thing I’ve done in my life. That’s why I seek out help. (wife, 70y)
	Specific cares	I used to clean up the messes in her bathroom, but now I just don’t. I’m like my mom in that I don’t want to have others work unduly, but I’ve just started calling the aides. I’ve been told that’s part of their job. (son, 58y) For his cares, I don’t do anything… I don’t feel good about it. But I don’t know what more I could do. (wife, 73y)
(3) Visits	Prioritization	I’m a doer. I like to fix things. So sometimes I feel like I should be there more often to be helping… That’s where my guilt comes in sometimes, feeling like I’m not doing enough for her… I think our of visits mother has always been a master of laying on guilt. It’s no different now. (daughter, 69y) I get a little bit more anxious when I should be able to go and I can’t. Or when I’m busy and trying to get something done and then I look at the clock and the whole day is gone. Then I feel bad and guilty. But he doesn’t know, to the best of my knowledge. But I still feel like I haven’t been doing what I should.. Maybe ‘should’ is not the right word. (wife, 55y)
	Frequency or length of visits	Oh there’s always guilt. I’m always feeling like I never spend enough time going to visit. Or if I said I was planning to, and I don’t, then there’s that. (daughter, 59y) The guilt feels like I have a ball and chain. I don’t go every day. People are drooping over in their wheelchairs and it’s depressing. It’s hard to be there.” (wife, 80y)
	Quality or content of visits	I was struggling with accepting that it was okay to maybe not spend as much time with my mom, but when I spend time with her making it more quality time. (daughter, 54y) I go for about an hour a day. I bring paintings in, I do artwork, so she’ll have something different to look at in the room. Try to keep her engaged. That’s about all I can do for her at this point. I feel guilty that I feel like I should be doing more but I don’t know what it would be. (husband, 59y)
	Care recipient reaction to visits	It was hard for me in the beginning, but I’m at the point where I’m present with my mom now and I’m happy with that. I don’t mind when she’s not in the right realm, if she’s talking about her parents. When I bring her a donut and she’s laughing and smiling, it doesn’t matter. She got choked up and then continued, When I tell her about my day, she’ll make these profound statements. She’s still in there. (daughter, 54y) It’s been good. He doesn’t put up a big fuss like he used to when I leave. Just a little bit. It is as smooth as you can expect… I know he’s happy to see us, but it seems like there is no conversation at all that he can join in on. He just talks non-stop about nothing, but I guess at least he’s vocal. (wife, 73y)
(4) Facility context	Quality of care	Guilt that I’m not doing more, that she’s in a place and not having the compassionate care that I would like her to have. I think that’s the big thing, that I am not doing more… Making sure that she has adequate care. Her needs aren’t being met. (daughter, 62y) I’m pretty happy with the personnel there. Everyone seems like they have a good attitude. They are hard workers. My only major malfunction is that they are severely understaffed but I understand that’s an industry-wide thing. (husband, 59y)
	Financial resources	We go over the bill every month, but if she runs out of money, she can’t stay there, they told us. (daughter, 71y) He’s got Medicaid, and we’re waiting to hear back from the VA on their benefits too… It’s terrible, it’s awful. All the paperwork, it’s like a nightmare. (wife, 73y)

Table 4.

Summary of Opportunities for Intervention to Alleviate Caregiver Guilt

Intervention/CG Strength	Description
Communication	Provide communication skills training and activities through role play situations; improve communication real-time during family session; provide training in effective communication, CG setting boundaries with others
Community or support	Encourage seeking community support; support groups; connecting with others in similar situations, has a lot of friends going through this too
Decision-making	Being able to talk through specific decisions re healthcare or traditions; provide training on effective problem-solving and conflict resolution
Focus on positives	What is going on / not going on that is actually good
Psychoeducation	Information provided by Counselor, knowledge that CG brings, what they already made an effort to learn
Reframing	Seeing situation differently, providing a different perspective, adjusting expectations
Self-forgiveness	“I’m doing my best”; CG not being so hard on self
Stress management or self-care	Steps that CG can take to manage stress or take care of oneself
Validation	Normalize CG experience, externally provided and/or CG brings it to the situation

Transition to RLTC facility

Both adult child and spousal caregivers expressed feeling guilt related to the transition of their care recipient to RLTC. The most frequently mentioned source of guilt was the decision to move their care recipient. Several expressed being unsure if they made the right choice; “I feel like I’ve abandoned [him] in some ways,” lamented Pamela (wife, 77y).¹ Guilt was often compounded when the move was against the will of the care recipient. Natalie (wife, 55y) elaborated:

He was agitated and he was angry. One time I came to visit him...and he just all the sudden said ‘I’m not here for me, I’m here for you. I’m here because it’s easier for you.’ I wanted to say ‘I don’t know how to take care of you and [our adult son] and the house. I don’t know how to do it anymore.’ I literally left in tears.

Spouses expressed guilt over the decision to move their care recipient when they felt they could have tried harder to keep them at home. Holly (wife, 73y) explained: “Sometimes I feel guilty that I should have kept him here, but there was no way. My level of stress was so high. However, now I feel guilty when I’m enjoying myself.” Caregivers who felt they kept their care recipient at home for as long as possible expressed feeling less guilt related to the decision to move them. Trisha (wife, 65y) described,

I used to feel guilty that I don’t have him at home anymore. But it’s pretty clear to me and others that I talk to, that it’s not possible to safely take care of him and myself at home. The guilt of that is gone. Not that it won’t come back ever.

TC Actions:

The TC helped participants process this guilt by affirming that there are genuine mental and physical limits to providing around-the-clock care. The TC emphasized that with the move to RLTC the caregiver took on new caregiving roles: consultant (sharing the care recipient’s history and preferences with staff), monitor (monitoring care received), and advocate (raising concerns for the care recipient and other residents). The TC also highlighted the importance of prioritizing self-care to avoid burnout and reminded caregivers that they have a right to feel good.

Timing of the move to RLTC was another source of guilt. Some caregivers expressed guilt over moving the care recipient too late in the progression of dementia. Others, such as Beth (daughter, 59y) expressed guilt over feeling like she moved her parents too soon:

“…maybe we started this process all too soon of taking my parents out of their home. Started the wheels going of institutional care. I know everyone would prefer to stay in their own home. Have we created this monster because she’s so unhappy and not in her own home?

In contrast, some felt less guilt because they proactively moved their care recipient rather than waiting until a crisis. They expressed feeling control over facility choice instead of being limited to those available at a point of crisis.

Family, friends, and other community members’ opinions of the move to RLTC also contributed to guilt. For example, Tonja (daughter, 59y) explained, “People often say to me, ‘I don’t know why your mom’s there, she doesn’t seem so bad’ so then I feel guilty.”

TC Actions:

The TC advised caregivers to recognize when others are causing feelings of guilt, evaluate the accuracy of their statements, and engage in positive self-talk. For Tonja, the TC provided validation that no one knows the details of her situation except her, to which Tonja agreed: “Yeah, and it’s a hard thing to explain to somebody.” This concern was especially salient for spouses if their peers had not yet been through an experience of caregiving. Carol (wife, 73y), whose husband’s dementia caused him to act violently towards her, explained:

People will say ‘Why did [you move him there] in the first place?’ When he’s so sweet when they’re around, I don’t want to say ‘He’s not always that way!’ I feel bad about saying that. He’s been ugly and violent. I feel guilty if I would say that, like I’m betraying his confidence.

TC Actions:

The TC encouraged the caregiver to evaluate whether people need to know this information and how comfortable the caregiver is with sharing it, emphasizing that it is the caregiver’s choice to share details. The TC discussed and role-played communication scenarios.

The care recipient’s reaction to the RLTC move and adjustment was another source of guilt. Usually, caregivers felt less guilt when they perceived a positive transition and more guilt when they thought their care recipient was adjusting poorly. Pamela (wife, 77y) said, “It’s just heartbreaking to go visit him when he keeps asking to ‘take me home.’” Others lamented their care recipient’s loss of autonomy as a result of the move. Dorothy (daughter, 67y) elaborated:

It was really upsetting to me to see how when you move someone into memory care, how they lose their personal agency. I didn’t know that, they didn’t paint it that way. I did not intend to do that to my mom.

Caregivers such as Holly (wife, 73y) felt guilty if they felt the move to RLTC precipitated a decline in health: “I wonder if his dementia has progressed more because he’s not engaged at the facility.” In contrast, caregivers felt less guilt if the transition enabled opportunities to participate in activities and to socialize. Brooklyn (daughter, 57y) explained her lack of guilt:

I feel like it’s improved her quality of life, social engagement, and in some ways has given me peace of mind. She had lived alone for so long, so I think not having a lot of engagement was not good for her. And at this place she can go around and have conversations and meals with people.

Caregiver Involvement

Many caregivers, especially adult children, described feeling guilty about their level of involvement. Spouses and adult children indicated their own physical health was a limiting factor. Many adult children were still working and several had children living at home. Several spoke directly to the difficulty of being in the ‘sandwich generation’: “I do have that guilt that I’m not there for my mom. How do I take care of my son [with special needs] and then take care of my mom?” (Claire, daughter, 64y). With limited time, their care recipient “gets the short stick and visits are skipped” Erin (daughter, 44y). Linda (daughter, 54y) explained:

It’s very hard when you’re working full time and our jobs are very stressful. I don’t even know how I survived my daughter’s senior year… [beginning to cry] No matter how hard it is for me, and it is really hard, I just have to do it. I’m not going to have that regret of not doing all that I could. It’s hard to have fun and go about your own business, knowing that mom is alone. It is really hard for me to take vacations.

TC Actions:

The TC and caregiver explored the complexities of caregiving when multiple responsibilities need attention. The TC supported setting reasonable goals for involvement.

Relationship histories and family dynamics greatly complicated many caregivers’ experiences and emotions. Many adult children spoke of it being “the right thing to do” (Eddie, son, 58y). Some without a positive relationship prior to caregiving described caregiving as an “obligation” tied to guilt. For example, Matt (son, 59y) explained his motivation for caregiving despite a complicated relationship with his mother when growing up:

I feel a sense of responsibility despite all the things that have gone on over the years with her. For whatever reason, and I grew up Catholic, there is kind of a guilt-ridden conscience. Honor-thy-father-and-mother. I think I’ve done a pretty good job of fulfilling the role here. So I don’t think I really have guilt here anymore. The relationship is pretty transactional.

TC Actions:

The TC validated the caregiver’s efforts and encouraged acknowledgement that their temperament, history, and relationship dynamics with the care recipient understandably affect their willingness and ability to provide care. These themes were reinforced when adult children expressed feeling guilty when they perceived their level of involvement to be less than their siblings. Similarly, adult children spoke of perceived differing levels of guilt among siblings. Linda (daughter, 54y) explained: “It does disappoint me that [caregiving responsibility] has fallen on me and it doesn’t seem like my brother and sister feel that guilty about it.”

Spouses often expressed that caregiving was ‘an act of love’ or ‘fulfilling marriage vows.’ Bernard (husband, 62y) explained: “I don’t feel obligated to be there every day, but I feel obligated to be there every day... I go there because of her. I know if the situation was reversed, she’d probably be there even more than I am. It’s who we are.”

Another source of guilt related to specific caregiving tasks. All spousal caregivers lived with their care recipient prior to the RLTC move. Some caregivers spoke of staff taking over hands-on care as a relief, but most others described feeling guilty that they had to stop providing intimate care to their spouse of many decades. William (husband, 59y) explained this conflict:

I was at near exhaustion from caring for her at home. I was relieved that the physical aspect was taken off my hands, I wasn’t on 24-hour alert. Almost immediately [after she moved] I had the guilt portion of that - ‘why are you feeling good, she is taken out of your care. That shouldn’t make you feel good.’

Some caregivers recognized that they were physically unable to provide hands-on care and that doing so would endanger both them and their care recipient.

TC Actions:

The TC validated caregivers’ health and safety concerns, educating that informal caregivers are at increased risk for health issues.

Visits

For most caregivers, visits to their care recipient were a major source of guilt. ‘Am I visiting often enough?’ was one of the most common questions asked. Frequently for adult children, competing priorities such as work and family commitments precluded visiting as often or staying as long as they thought they should. Hadley (daughter, 45y) felt guilty for not visiting her father more: “How do I balance all of this with the rest of my life? I want to be there every day, but I know that’s not realistic. I don’t know how to help myself feel ok with not going there.”

TC Actions:

The TC helped participants figure out a manageable frequency of visiting considering their emotional capacity and lifestyle. The TC supported realistic goal-setting to enable a sense of doing your best and emphasized the impossibility of satisfying the immeasurable concept of ‘enough.’

Adult children with siblings often compared their visit frequency. Jenn (daughter, 54y) explained:

Comparing myself to the couple of siblings who live in town, maybe they do more…I have accepted the fact that I can only do as much as I can do and be okay with that. I know when I can go and when I can’t go. I think [the guilt] has gotten better.”

Many long-distance caregivers, all adult children, expressed guilt over not visiting enough. Yet even local caregivers expressed frequent guilt due to feeling obligated to visit every day.

Both adult children and spousal caregivers struggled to have meaningful visits and felt guilty when visits did not go well. They spoke of not enjoying the visits, feeling like they were unable to make a connection with their care recipient, had to entertain, or simply did not know what to do or say. Jenn (daughter, 54y) elaborated:

I really really struggle with [visiting mom] on my own. I’m struggling with what I do with her now to keep her occupied. [I don’t visit during the week now] unless I can really ramp myself up for the unending questions. I try to redirect, but it’s almost to the point that just isn’t there anymore. She can’t focus on anything other than what day it is.

TC Actions:

The TC suggested activities to engage the care recipient during visits such as looking through photo albums and attending center-hosted activities. The TC emphasized that just being present is enough and listening to music or going on a short walk can make for a good visit. The TC also gently encouraged caregivers to shift their perspective from placing heightened value on making memories to being present and sharing in meaningful moments, whether that be a smile or holding hands. The TC provided psychoeducation on reasonable expectations for care recipient engagement and how to handle potentially frustrating issues like repetitive questions. At a later session, Jenn described how her visits to her mother had improved:

Lately [the visits have been going] very well. I think over time the expectations of the visits have changed. Or we maybe finally have gotten in tune that there shouldn’t be expectations for the visit. You really don’t know what the day might hold or how sharp she might be. At least I know my visits are much better than they were before...you don’t always need to be talking. Sometimes we just sit. She seems okay with it for a while, but then she’ll start asking repetitive questions. I don’t have a problem with answering it like I used to. It just is what it is.

Caregivers such as William (husband, 59y) reported that their care recipients made them feel guilty about not visiting often or long enough: “I go every day and have at least an hour visit. I feel like that’s a pretty good commitment. She, on the other hand, says that it’s short to her.”

TC Actions:

The TC stressed that visits do not have to last long or occur often, emphasizing that just being present can leave the care recipient with positive feelings that last the day.

Caregivers described how their care recipients became upset when it was time for them to leave. In the case of Erin (daughter, 44y), the TC noted her concerns that when she left, her mom became tearful. Erin shared feelings of guilt and grief over the loss of the mother she knew.

TC Actions:

The TC provided empathy and validated the caregiver’s feelings. Psychoeducation covered how dementia can agitate and heighten emotions. To ease departures, the TC suggested caregivers leave at the start of an event (e.g., meal, group activity), collaborate with staff to help distract the care recipient, and avoid sundowning or other times of day with high distress.

Caregivers also felt conflicted about including their care recipient in family events such as weddings, funerals, and holiday gatherings. Doing so could disrupt the care recipients’ routine, cause agitation, and pose potential health risks. It also requires extra energy from the caregiver by diverting attention from the event to the care recipient. On the other hand, not bringing the care recipient meant leaving them out of important family events and traditions. Case notes from Kim (daughter, 51y) illustrate this:

Kim shared that she is sad and sometimes feels guilty that she cannot take her mom out of the center anymore as her mom has great difficulty with mobility and uses a wheelchair. She lamented the loss of getting together at the holidays and worried that her mom would recognize that they were celebrating without her. We also talked about two of her children getting married and her mom not being at the weddings.

TC Actions:

The TC helped caregivers process their feelings of loss over the care recipient’s inability to attend family events and provided empathy for the difficult decision. The TC and caregiver explored the stress of hosting the care recipient at the celebration and identified potential ways to alleviate stress, such as sharing responsibility for the care recipient with other family members. The TC also provided psychoeducation that leaving the RLTC and being around a group of people, even family, could be overwhelming for the care recipient. The TC and caregiver evaluated the likelihood that the care recipient would realize the family was celebrating without them. Then the TC helped the caregiver to reframe the situation as an opportunity to start new traditions and problem-solved ways to celebrate at the care recipient’s current level of functioning and presence.

Facility Context

Many caregivers recognized that their care recipient was safer in the facility than at home and tended to express less guilt as a result. Nicholas (son, 51y) explained:

The facility is awesome. They bring in entertainment and have exercise classes. She is always active. She’s eating good. [Mom’s doctor] encouraged assisted living. He said, ‘once the family can sleep good at night, we know you are in the best environment possible.’ And we’re sleeping good.

Other caregivers expressed concerns about their care recipient’s facility and quality of care, such as Linda (daughter, 54y): “I think that’s where my guilt plays into it; I can’t just go about my day, thinking that mom is 100% taken care of.” Because her mother was not in a highquality care environment, Linda visited as often as she could manage.

TC Actions:

The TC provided empathy and supported caregivers by clarifying their concerns and encouraging caregivers to advocate for their care recipient’s needs. The TC educated caregivers on the four steps of conflict resolution, stressed the importance of focusing on the problem (as opposed to faulting staff), and encouraged collaboration with staff to brainstorm resolutions.

Caregivers expressed guilt about not having enough financial resources to pay for care and the prospect of having to move their care recipient to a shared room or less expensive facility. Claire (daughter, 64y) expressed:

My parents have sufficient money for my mom for the next 18 months. After that, my mom would have to go on Medicaid. My husband’s retired, I work. But we also have expenses with my son, who has epilepsy. His medications are incredibly expensive. We wouldn’t be able to afford to keep my mother in the facility.

Others felt they were doing their best given their financial circumstances and did not feel guilt.

TC Actions:

The TC emphasized to caregivers that they were doing their best, provided resources and information on financial programs and services, and coached caregivers on how to communicate with their families and RLTC staff about financial issues.

Discussion

In this mixed methods study, nearly half of all caregivers reported experiencing guilt from their care recipient, other family members, or facility staff. Compared to spouses, adult children were more likely to report feeling guilt from other family members. However, in our multivariable model (Table 2), caregiver relationship to care recipient was not a significant predictor of guilt after controlling for other characteristics. The association between caregiver-care recipient relationship and guilt may be mediated by factors not measured in our quantitative analysis. Thematic analysis provided rich insight into similarities and differences in spouse and adult child caregivers’ subjective guilt experiences and suggests potential mediators. Specifically, the qualitative results suggested that adult children may experience more guilt from other family members due to shared caregiving responsibilities, dynamics of existing sibling relationships, and comparisons with others’ level of involvement and visits.

Sources of Guilt

Caregivers frequently reported guilt related to their care recipient’s transition to RLTC, their subsequent care involvement, the frequency and quality of visits, and their perceptions of the facility. Within these themes, there were differences in how spouses and adult children described guilt from these sources. Although the choice to move their care recipient into RLTC was the most frequently discussed source of guilt for all caregivers, spouses expressed unique guilt about making the decision because they could no longer care for their spouse at home or provide daily hands-on care. This guilt was compounded by perceptions of peer or community judgement.

In contrast, adult children frequently reported guilt related to balancing their responsibilities as a caregiver, spouse, parent, and working adult. Perhaps due to these competing responsibilities, on average adult children visited less frequently than spouses (11.0 visits/month vs. 19.6 visits/month). Though all caregivers were concerned about their level of involvement, adult children were especially concerned about visiting enough. Comparisons to siblings were very common and may explain, at least in part, why 29.8% of adult children (vs. 4.0% of spouses) reported feeling guilt from other family members.

Observed differences between spouse and adult child caregivers may stem from the unique qualities of spousal and parent-child relationships. Several participants related how their current experiences with guilt reflected their shared history (good or bad) with their care recipient. Spouses frequently reported that they fulfilled their caregiving role as an act of love while adult children more often framed it as an obligation or responsibility. Furthermore, adult children’s experiences with guilt were interwoven with perceptions of their siblings’ guilt, while spouses generally filled a singular role in their care recipient’s life.

In our thematic analysis, guilt experiences common to spouse and adult child caregivers included how well or poorly they felt their care recipient was adjusting, their care recipient’s responsiveness to visits, and the facility’s quality of care. In the context of close relationships, guilt can reflect negative feelings generated by real or perceived harm, loss, and distress put upon another person (Baumeister et al., 1994; Kalmijn, 2020). In our study, regardless of their relationship, caregivers who perceived that the transition into RLTC had not caused major harm, loss, or distress to their care recipient appeared to experience less guilt.

Contextualizing with the Broader Literature

Guilt associated with placement of a family member living with dementia in long-term care is well-documented (Graneheim et al., 2014; Prunty & Foli, 2019). Likewise, differences between spouse and adult child caregivers in measures of burden and psychological distress have frequently been explored (Pinquart & Sörensen, 2011). The present study extends dementia caregiver psychological interventions (e.g., Davis et al., 2011; Paun et al., 2015) by documenting the unique experiences of family caregiver guilt following the transition into RLTC.

In the present study, spouses who reported they were no longer able to safely care for their care recipient at home, a major impetus for RLTC placement, expressed both relief and guilt about RLTC placement (Afram et al., 2014). Relief may be a result of knowing that the care recipient is now getting better care than they could at home. As seen in our study, guilt may result when there is a sense of familial duty or cultural responsibility to care for the recipient at home. Similarly, a study in the Netherlands found that adult children receiving support from parents along with normative filial obligations results in more guilt (Kalmijn, 2020).

Strengths and Limitations

This study is one of the first to explore the unique guilt experiences of spouse and adult child caregivers in the context of transitioning to RLTC. It combines both quantitative and qualitative data to describe the complex concept of guilt for this population, which is a novel approach in the aging literature (Gaugler et al., 2018). Mixed methods enhance the findings of this research by incorporating the strengths of both: The quantitative data provided overarching group-level trends (i.e., statistically significant differences between spousal and adult child caregivers), while thematic analysis of the qualitative data identified nuanced perspectives from a spectrum of guilt experiences using the participants’ own voices. The qualitative data also support future quantitative research by identifying potential moderators for future assessment. Moreover, qualitative results describe successful TC strategies that caregivers were able to apply in real time, highlighting clinical mechanisms that could be targeted in future interventions. The TCs’ ability to connect and provide support given their professional experiences and backgrounds was a strength in this study but may limit the RCTM’s generalizability.

The secondary analysis and exploratory nature of the study necessitated two main limitations. First, there were no a priori power calculations for the models predicting guilt because it was not a primary outcome of the parent study (Gaugler et al., 2020). Second and related, three binary items (yes/no) were the only measure of presence of guilt, thereby, limiting the ability to thoroughly evaluate manifold aspects of guilt quantitatively. However, the TCs’ notes provided extensive and rich qualitative data on guilt, which are powered at much higherthan-conventional levels of qualitative studies. Future work should include more comprehensive measures (Davis et al., 2019; Losada et al., 2010) to better capture nuanced experiences of guilt following a transition to RLTC. These measures could be used to evaluate specific sources of caregiver guilt (e.g., difficulty letting go of caregiving duties), track guilt over time, and identify caregivers who are at-risk for experiencing difficult transitions (Davis et al., 2019). They could also serve to empirically assess some of the potential mediators identified in the qualitative results of the present study.

Clinical Implications

Given that guilt can stem from multiple sources and is unique to each individual, the role of a clinician in a RTLC transition bears multiple responsibilities. An openness to understanding a caregiver’s individual definition of guilt is paramount. Rather than presupposing a generic concept of guilt, clinicians need to explore in what ways ‘guilt’ has emerged for the caregiver, especially through the relational lens of couple and family psychology. This exploration can open the conversation to what guilt means to the caregiver, nurturing positive self-reflection and awareness. Subsequently, offering examples of how other caregivers have experienced guilt in this scenario (e.g., circumstances of the decision to move, visit frequency) can help validate the caregiver’s reactions and reduce guilt, especially for caregivers who feel isolated. It is also critical for clinicians to provide genuine empathy and validation of caregiver feelings and concerns. Teaching caregivers to reframe negative perceptions, focus on the positives, and engage in constructive self-talk are useful tools to help manage feelings of guilt.

As shown in this study, the experience of guilt can vary depending on the relationship of the caregiver to care recipient. These differences can inform treatment strategy and planning depending on caregiver roles and needs. For example, the finding that spouses were more likely to mention others’ perceptions of the situation as a source of guilt informs a clinical need to probe deeper into the client’s community, support system, friend group, and peer relationships. If the client’s close friends have never been through this experience, suggesting a support group focused on dementia caregiving might be helpful.

The study’s qualitative findings indicate adult children more frequently mentioned visit quantity and length as a source of guilt, and the quantitative findings show they visit less often than spouses. This demonstrates an opportunity to probe deeper into how the adult child views their role as caregiver to an aging parent. For example: “How often were you seeing your mom before this? Were you close before she needed to move into memory care?” It is important for clinicians to bear in mind that the prior relationship may not have been close and may have been abusive. Family history and dynamics can complicate the caregiver’s emotional experience and affect the energy and effort they commit to caregiving. Given that adult children are more likely to still be working and/or tending to their own children, clinicians can validate the experience of being in the ‘sandwich generation,’ with multiple responsibilities and often-conflicting priorities. Clinicians should offer decision-making support and provide psychoeducation on stress management strategies and the importance of self-care and self-forgiveness.

Ultimately, the experience of guilt as a caregiver for a spouse or parent with ADRD living in RLTC remains a complex and highly personal journey. As always, the role of a clinician is to tailor treatment to the client’s experience and not apply their own definition of guilt to their clients’ caregiving situation. Indeed, spouses and adult children had thematic overlap in their guilt experiences, but the variation is important to consider when designing a treatment plan to best support clients who are going through the challenging, but often rewarding experience of caring for a person living with memory loss.