Dementia Caregiver Experiences: Insights From a Telephone-Based Support Program

Abstract

Dementia caregivers face daunting challenges as both the oldest subpopulation of those providing unpaid care and the most at risk of adverse health outcomes as a result of their role, including depression, anxiety, and increased mortality. To better understand the experiences and needs of dementia caregivers, a qualitative content analysis was conducted of secondary data extracted from call logs (N = 569) recorded by a provider-initiated, telephone-based support program. Experiences identified from the call logs were coded, categorized, and ranked to determine the most prevalent dementia caregiving-related experiences. Features of the program, particularly the semi-structured call format and directionality of calls, helped to uniquely capture common experiences of family caregivers and their day-to-day concerns. Findings from this analysis reflect the high prevalence of caregiver mental and emotional health-related concerns. This analysis supports the development of interventions that align with the experiences of dementia caregivers.

Keywords

caregiving dementia home- and community-based care and services long-term services and supports geriatrics

What this paper adds

• The provider-initiated nature of telephone-based support calls in this analysis offers unique insight into the day-to-day concerns of dementia caregivers as well as potential missed opportunities for intervention.

• Quantifying and ranking caregiving-related experiences allow comparison between the most commonly assessed experiences in previous, structured caregiver needs assessments and the most commonly reported experiences by dementia caregivers in these semi-structured conversations.

Applications of study findings

• This list of most common dementia caregiving-related experiences can guide future interventions to target highly prevalent needs among dementia caregivers, for example, more accessible mental health and respite services.

• “Mental and emotional health of the caregiver” (n = 186) was the most common experience category by a wide margin; therefore, caregiver mental and emotional health should be screened and monitored both in research and in clinical practice.

Introduction

Over 11 million Americans provide unpaid care to persons living with dementia (PLWD) (Alzheimer’s Association, 2023; The Lancet Neurology, 2021). Compared to other caregivers, individuals caring for PLWD tend to experience unique caregiving challenges and are at greater risk for adverse health outcomes, including depression, stress, and higher mortality (Alzheimer’s Association, 2023; Jennings et al., 2015; Lee et al., 2019). Dementia caregivers demonstrate low levels of subjective well-being, physical health, and self-efficacy to provide care (Alzheimer’s Association, 2023; Brodaty & Donkin, 2009; Meyer et al., 2022). These variables are associated with various poor health outcomes, which are especially concerning for those caring for persons with dementia, given that they are a significantly older population than non-dementia caregivers (National Alliance for Caregiving and the Alzheimer’s Association, 2017). Mental and emotional stress among more senior adult spousal caregivers and caregivers experiencing strain has been found to be an independent risk factor for mortality (Alzheimer’s Association, 2023; Schulz & Beach, 1999). For dementia caregivers, a caregiving population with high strain, the highest levels of stress, and a mean age of 77.2 years (National Alliance for Caregiving and the Alzheimer’s Association, 2017), 35% reported deteriorations in their physical health attributed to their role (Lucero et al., 2019). Patient outcomes are also impacted, with higher caregiving burden and having at least 6 depressive symptoms being predictive of nursing home placement for patients with dementia (Yaffe et al., 2002).

Given the mental and physical impacts of high-stress caregiving, it is important to assess the needs of dementia caregivers from a clinical perspective. A meta-analysis of 127 interventions aimed at improving caregiver burden demonstrated a small but significant improvement in burden, depression, subjective well-being, caregiving knowledge, and coping skills (Pinquart & Sörensen, 2006). These promising results motivate the call for more targeted interventions utilizing treatment combinations individualized to caregivers’ greatest needs (Belle et al., 2006; Novais et al., 2017). However, there are numerous barriers to identifying dementia caregiver needs. Emphasis both in research and practice on the patient’s needs has led some to describe caregivers as “the invisible patient.” In addition, caregivers may be reluctant to have their needs assessed in the care recipient’s presence (Aoun et al., 2018).

Previous dementia caregiver needs assessments vary greatly in methodology and approach (Novais et al., 2017). Some provided preset lists of concerns for dementia caregivers to choose from, which helped caregivers to identify concerns that they had trouble articulating before but could have benefitted from a less structured approach (Cova et al., 2018; Nichols et al., 2008). Others categorized concerns into broad themes (Lins et al., 2014; Nichols et al., 2008), which our work seeks to break down into more granular detail, aggregate, and rank by prevalence. Needs assessments based off of hotline-style telephone support programs for those caregiving for patients at the end of life (Phillips et al., 2008) may produce inherently different, context-dependent needs data given that caregivers may have difficulty remembering other important concerns in the presence of an emergent problem. Therefore, additional research is needed regarding the day-to-day concerns of dementia caregivers before they become critically unmet needs. Evaluation and ranking of day-to-day concerns benefit from a provider-initiated sampling methodology to minimize context dependence, as well as an open-question-based process of data collection to maximize detail and minimize researcher bias (Turner and Hagstrom-Schmidt, 2010), an approach for which qualitative content analysis is best suited (Morgan, 1993).

The COVID-19 pandemic has accelerated the rise in telehealth interventions and led to greater accumulation of evidence proving their effectiveness in outreach, screening, and care coordination for older adults to the resources they need (Lee et al., 2023). A 2018 systematic review of information and communication technologies for dementia caregivers found telephone support programs to be the strongest evidence-based interventions across a heterogeneous pool of caregiver-related outcomes (Lucero et al., 2019). Prototypical telephone support programs for caregivers in the US have a single entry point strategy, which is a model focused on providing one-stop access to resources, whether that is information, education, events, referrals to community resources like respite programs, or companionship (Wright et al., 2015). Facilitated access to resources and companionship is particularly helpful for dementia caregivers, who often feel socially isolated as care requirements become 24-h supervision in later stages of dementia (Salfi et al., 2005). The Caring for the Caregiver program provides a telephone support service in San Antonio, Texas, which modifies the traditional single entry point model by reversing the directionality of calls from being caregiver-initiated, akin to a crisis hotline, to being provider-initiated. The intent was to preemptively identify and address concerns before they reach a critical level of need prompting a caregiver-initiated call (or worse, a missed opportunity). The contents of these calls provide a valuable opportunity to categorize and prioritize the top concerns raised by dementia caregivers while uniquely benefiting from the longitudinal, provider-initiated, and open question-based sampling methodology utilized by this innovative telephone support program. Our qualitative analysis seeks to identify the top concerns expressed by dementia caregivers using secondary data extracted from semi-structured calls through the Caregiver Telephone Reassurance Program.

Caring for the Caregiver

Caring for the Caregiver is a UT Health San Antonio School of Nursing program that provides education, engagement, and research opportunities at no cost to families impacted by dementia. Shortly after the declaration of COVID-19 shelter-in-place orders, the Caring for the Caregiver program transitioned its services to virtual delivery. The Caregiver Telephone Reassurance Program (CTRP) was established to assist family caregivers through the provision of supportive reassurance, social connection, and tailored resource referrals.

CTRP utilizes an “opt-out” approach, where caregivers in the Caring for the Caregiver program network are offered the opportunity to decline the service. Caregivers are eligible to enroll if (1) they are/were caring for a person living with dementia or another chronic condition, (2) they have agreed to be contacted by telephone, and (3) have a functioning phone number on record. If caregivers match these criteria, they are assigned by the CTRP coordinator to a caller for a period of 4 months or longer, depending on whether they elect to opt-out at any point or discontinue answering telephone calls. Calls are conducted by health professions students, including nursing, physical therapy, occupational therapy, and speech language pathology students. Alongside student callers, a family caregiver specialist is assigned a call list of any caregivers who are identified by the CTRP coordinator as experiencing acute or ongoing complex caregiving challenges that may need a higher level of support.

Callers are trained around the experiences and needs of families impacted by dementia, best practices for communication and confidentiality, how to conduct and document calls in a secure database, and how to collaborate with the Caring for the Caregiver team to connect caregivers to local, regional, and national resources. Callers are assigned caregiver caseloads upon completion of mandatory twice per-year training. Supplemental training is provided to reinforce dementia-friendly practices and motivational interviewing skills. Callers are required to contact their assigned caregivers at least once per month or more often if desired or needed by caregivers.

Prior to conducting their first assigned calls, callers review documented records on their assigned caregivers to learn about their individual experiences and issues needing to be addressed. Calls are otherwise unstructured but documented using a semi-structured form (call log) in a REDCap database (Harris et al., 2019) to record any potential challenges caregivers are experiencing, goals set together with the caller, and if follow-up referrals are needed. An open-text section with notes is completed for all answered calls, summarizing what was discussed and recommendations made by the caller regarding what actions should be taken. Callers indicate whether caregivers require more in-depth follow-up or specific resource referrals needed from the Caring for the Caregiver team.

Methods

Secondary call log data was extracted from semi-structured calls through a provider-initiated telephone support program. To evaluate the experiences of family caregivers enrolled in CTRP from June 2020 and December 2022, call log notes were collected from the database, de-identified, and analyzed. Call log data were included if the calls were (1) answered by the caregiver, (2) contained written notes, and (3) notes were substantive enough to describe the experience(s) of the caregiver discussed on that call. A total of 2494 calls were made between June 2020 and December 2022, 885 of which were answered by the family caregiver. After applying the above criteria, N = 569 call logs collected from telephone conversations with 282 individual family caregivers were ultimately included in the qualitative analysis.

Analysis

To generate a list of most reported caregiving-related experiences, qualitative content analysis was performed of secondary call log data. Analyses of call logs were conducted by a research team of two trained research assistants (coders) and a lead researcher. In the initial phase, open-coding was conducted on half of the call notes (n = 286) to ensure codes were data-driven. Codes were assigned to caregiver experiences identified in the call log notes and organized into a provisional list of codes. Independently, the lead researcher coded 20% of the call logs (N = 58) to support intercoder reliability. Using the list of codes, the remaining call notes (n = 283) were coded. The final code list was refined using an iterative process in which any coding discrepancies were discussed with the lead researcher, revisiting call notes as needed, until agreement was achieved. The code list was organized by the research team in which related experiences were grouped together under broader descriptive categories. Total counts were obtained to determine how often each coded experience was documented by callers in their notes.

Results

Demographic characteristics of caregivers represented in the call logs are reflected in Table 1. Most caregivers were women (80.1%), Hispanic (46.7%), caring for a parent or grandparent (49.8%), and over 65 years old (48.2%). The program providing the CTRP is located in a region represented by a majority Hispanic community. The program provides bilingual English and Spanish programming throughout surrounding areas, including some counties representing populations upwards of 90% Hispanic, explaining the high representation of Hispanics in this sample.

Table 1.

Demographic Characteristics of Caregivers.

Characteristics	n	%
Gender	272
Woman	218	80.1
Man	54	19.9
Ethnicity	214
Hispanic	100	46.7
White, non-Hispanic	95	44.4
Other	19	8.9
Relationship to care recipient	241
Parent or grandparent	120	49.8
Spouse	101	41.9
Other	20	8.3
Age	197
25–39	8	4.1
40–54	31	15.7
55–64	63	32
65+	95	48.2

The top ten categories of caregiving-related experiences noted in the call logs (n = 569), shown in Table 2 with exemplar quotes, are in decreasing order: “Mental and emotional health of the caregiver” (n = 186), “Physical health of care recipient living with dementia” (n = 107), “Arranging services & support for person living with dementia” (n = 94), “Behavioral symptoms of person living with dementia” (n = 87), “Caregiver needs for information and resources” (n = 74), “Physical health of the caregiver” (n = 58), “Caregiver needs to be connected to caregiving community and events” (n = 51), “Cognitive impact of dementia for person living with dementia” (n = 42), “Legal needs for caregiver and person living with dementia” (n = 32), and “Social health of person living with dementia” (n = 26). A list of all experience categories identified from the call logs along with their total count is included in Supplemental Table 1.

Table 2.

Top Ten Caregiver Experiences Ordered by Frequency of Occurrence.

Rank	Experience	F	Exemplar quotes
1	Mental and emotional health of the caregiver	186	“[The caregiver] has talked with Dr. about mental health and was put on antidepressants. She doesn’t really like taking them, but her dad’s passing and her mom’s condition kind of changed [the caregiver’s] situation. She states she does not like to go to anybody for help and she is that person for everyone else. Did not go through grief counseling due to lack of time.” (record 1864)
2	Physical health of care recipient living with dementia	107	“[The care recipient] has been having trouble talking on the phone and having trouble finding a landline phone that she is able to use. [The care recipient] has hearing aids, but [the caregiver] is unsure if this difficulty might also be due to her dementia. She states that her [care recipient] is ‘unable to hear very well even when the phone is on speaker’.” (record 140)
3	Arranging services & support for person living with dementia	94	“[The caregiver] would like to know if there are any adult day care services operating currently. The center she used to take her mother to has been closed and her mother really misses going. She would like more information/follow up on this issue.” (record 1538)
4	Behavioral symptoms of person living with dementia	87	“[The caregiver] said she was having a hard time with her husband’s behavior recently. He thinks he can still do a lot of things on his own without help and she said it has been difficult to deal with.” (record 1749)
5	Caregiver needs for information and resources	74	“[The caregiver] is seeking information about long term care facilities for the future. She plans to care for her husband for as long as she can, but she’s not sure how much longer that will be. She is also wanting some information on how to have that conversation with her husband. He is physically mobile and not sure how he will take it. She’s not ready to make any decisions just yet but wants to have that info…” (record 1720)
6	Physical health of the caregiver	58	“[The caregiver’s] health is quite complicated, requires wheelchair herself most of the time and is need of several surgeries she has been postponing but must have one of them soon.” (record 13)
7	Caregiver needs to be connected to caregiving community and events	51	“[The caregiver is] Seeking support group once a week. Is wanting to brainstorm with other caregivers to see how they handle certain challenges so she can implement solutions with her husband.” (record 1429)
8	Cognitive impact of dementia for person living with dementia	42	“[The caregiver] cares for her brother who she lives with. She says his memory is getting a little worse so she is not leaving for long periods of time anymore.” (record 860)
9	Legal needs for caregiver and person living with dementia	32	“[The caregiver is] seeking legal assistance completing paperwork validating a long term disability claim with husband’s employer. She is not sure what she should/shouldn’t sign.” (record 1429)
10	Social health of person living with dementia	26	“Her husband [living with dementia] is also a social butterfly so she is looking to have someone here to talk with him… Interested in social events/activities for her husband…” (record 1429)

Call participants reported “Mental and emotional experiences of the caregiver” above all other categories of caregiving-related experiences (n = 186). Within this category, stress and feeling overwhelmed by caregiving responsibilities was a common subcategory of experience documented in call logs. Caregivers often balanced different responsibilities including employment, caring for multiple people, and maintaining their households. One caregiver note reads as follows:

“[The caregiver] told me that she was very overwhelmed with caring for her mother 24/7… She expresses that she needs support in ‘everything’ and doesn’t know what else to do. She is ‘too overwhelmed to do research and read anything right now’” (record 13).

Call notes frequently cited caregiver experiences of grief and loss associated with their role, often tied to the death or anticipated death of the PLWD:

“[Her husband and care recipient] passed away [six months ago]… She did go through depression and grief for a time. She had lost her son during her husband’s illness and she did not allow herself to grief until her husband passed” (record 1644).

Call notes documented many experiences related to the “Physical health of the care recipient living with dementia” (n = 107). Call logs reflect that caregivers often shared that they were navigating the physical health challenges of their care recipient’s acute or chronic health conditions in addition to dementia. One caller noted:

“[The care recipient] was recently treated inpatient for a UTI because she was resistant to the antibiotics and had to go to a skilled nursing facility after hospital discharge… Caregiver stated [the care recipient] is no longer walking but is getting time with the physical therapist” (record 1235).

Another frequent experience was “Arranging services & support for the person living with dementia” (n = 94). Within this category, call notes reflected that caregivers were seeking healthcare services and community resources, particularly respite care, to support their needs. Call logs often featured struggles with navigating complex healthcare systems to attain services:

“Her mom has a very high fall risk and [the caregiver] can’t watch her all the time. Respite care is her HIGHEST PRIORITY right now, so [the caregiver] can get some time to work… Transportation issues is [sic] another main concern for her… It’s difficult to even get groceries because of the lack of reliable transportation and respite care… She is also trying to figure out how to best set up her mom’s primary care provider, since her geriatrician [name redacted] is harder to get a hold of” (record 13).

Another experience category includes caregivers’ challenges related to “Behavioral symptoms of the person living with dementia” (n = 87). Callers often documented behavioral dementia symptoms as a barrier to caregivers’ ability to provide care:

“Main concern is maintaining good hygiene for mom (care recipient). She forgets to wash her body when bathing but is combative against anyone who tries to help her… She won’t brush teeth or use deodorant and gets mad if someone tries to make her. She will pretend she’s asleep and won’t listen or will ‘throw a fit and then go back to bed’” (record 1328).

Another common experience was “Caregiver needs for information and resources” (n = 74). Caregivers were often seeking education to prepare for their role:

“[The caregiver] stated that her husband was diagnosed with Lewy Body dementia. She says she has been feeling slightly overwhelmed about everything that comes along with this diagnosis and doesn’t know where to start. She says she attended a virtual session with [a local organization] awhile back but felt too overwhelmed by all the info at the time” (record 1856).

The “Physical health of the caregiver” (n = 58) was also frequently documented. Caregivers were often managing their own acute or chronic conditions:

“[The caregiver] uses a walker for long distances and uses a cane for shorter distances. She’s fallen quite a few times recently and ended up in urgent care… She cares for her brother who she lives with” (record 860).

The seventh most cited experience in call logs related to “Caregiver needs to be connected to caregiving community and events” (n = 51). Within this category, the notes often described caregivers asking for peer support groups and programs like memory cafés which provide social opportunities for caregivers and PLWD. The following call log highlights these needs:

“She expressed that right now she needs support, she would love to go out and do things but her husband does not want anyone to watch him. She expressed she needs a support group and someone to talk to about what she can do at this time” (record 1873).

Noted in call logs were descriptions of the “Cognitive impact of dementia for person living with dementia” (n = 42), often related to memory decline or other impacts such as speech and word-finding difficulties. One note reads:

“Went to heart doctor got a stress test and echo [for the PLWD]. She has swelling in feet, pain, chest pain but can’t communicate it due to the dementia. Has anxiety and difficulty speaking” (record 1949).

Call notes also highlighted “Legal needs for caregivers and persons living with dementia” (n = 32), often related to completing advance directives or financial and asset management, among other related legal issues. The following call note describes a need for legal support related to property:

“Caregiver is wanting legal advice relating to transferring a home from her mom’s name to her name. She already has Power of Attorney but needs some assistance with completing this form” (record 1468).

Call notes described experiences related to the “Social health of person living with dementia” (n = 26), often related to caregiver concerns about remaining socially active and engaged to support their quality of life. One call note reads:

“Caregiver stated that his spouse (the person he cares for) is very social, and he would love to find out more about in-person social group opportunities for people living with dementia” (record 330).

Discussion

This paper presents findings from a qualitative content analysis of notes documented from calls to an open cohort of family caregivers enrolled in the Caregiver Telephone Reassurance Program (CTRP). The most frequent experiences identified represent a range of circumstances related to the caregiving role, with the most frequent being the “Mental and emotional experiences” of caregivers (n = 186), particularly around stress and grief. Previous literature has identified that emotional and psychological support resources are a critical unmet need in this population, with nearly 75% of dementia caregivers surveyed in one study reporting no emotional support from family or friends (Ducharme et al., 2011). Another reason why their mental health needs often go unmet is reluctance to bring up emotional challenges in the presence of the care recipient, who they may increasingly accompany as care demands increase in the later stages of dementia (Aoun et al., 2018). And yet, caregivers experience grief and loss even prior to bereavement and can benefit from grief counseling during the severe stages of dementia (Aoun et al., 2018; Gitlin & Hodgson, 2015). The high prevalence of grief among dementia caregivers in this analysis is consistent with prior literature (Nichols et al., 2008; O’Donnell & Baker, 2023) and indicates a great need for accessible psychological/psychiatric services, for example, telemental health services, to overcome barriers such as 24/7 care responsibilities (Egan et al., 2018).

Neuropsychiatric symptoms of dementia have been found to be both the most predictive factor and most frequently reported cause of caregiver burden (Aoun et al., 2018; Cheng, 2017). Therefore, “Behavioral symptoms of the person living with dementia” were unsurprisingly also among the most described experiences in the call logs (n = 87), suggesting that more evidence-based interventions addressing behavioral manifestations of dementia are needed to support caregivers. Particularly, common behavioral concerns centered around difficulties attending to the care recipient’s hygiene during periods of aggressive behavior as well as fears for the care recipient’s safety during episodes of wandering behavior. Coping with the increasing difficulty of their care responsibilities as well as conflict with the care recipient both contribute to chronic stress and exhaustion, a physiologic state that puts caregivers at risk for depression, anxiety, as well as cardiovascular disease (Cheng, 2017). In addition, previous literature has found that disruptive behaviors can negatively impact the emotional connection between caregiver and care recipient, contributing to their sense of loss in the later stages of dementia and likely mediating the relationship between behavioral symptoms and increased caregiver burden (Aoun et al., 2018; Cheng, 2017).

Other commonly described experiences were the “Physical health of the care recipient” (n = 107) as well as “Arranging services and support for the person living with dementia” (n = 94). The most common subcategory (see additional materials) related to the arranging of services and support was “Home care,” in particular finding respite programs that provide professional caregivers to temporarily relieve them of their responsibilities. While previous reviews have found inconclusive evidence that respite can simultaneously improve caregiver and care recipient outcomes (i.e., decreasing caregiver burden and delaying time to nursing home placement) (Maayan et al., 2014; Vandepitte et al., 2016, 2019), it is interesting to note that the majority of studies assessed the efficacy of institutional respite care (“short stay” daycare and temporary residential admission models) as opposed to in-home respite care. Several studies have reported in-home respite care to be the preferred type by caregivers (Ashworth & Baker, 2000; Zarit et al., 1999), yet studies of in-home respite care are rare (Vandepitte et al., 2016). A recent study of 99 dementia caregiver–care recipient dyads focusing on in-home respite care showed significant, though short-lived, decreases in caregiver strain and burden shortly after the intervention, yet significant decreases in caregiver desire to institutionalize the PLWD lasting at least 6 months after the intervention (Vandepitte et al., 2019). Based on the frequent engagement in respite care coordination among caregivers in this analysis, there is clearly enduring interest in the potential benefits of taking a break. Given Vandepitte et al.’s promising preliminary evidence that respite can improve the lives of caregivers without accelerating time to institutionalization, the authors recommend further research investigating best practices in in-home respite care to lengthen the duration of positive effects on caregiver burden while still conserving long-term decreases in caregiver desire to institutionalize the care recipient.

“Caregiver needs for information and resources” were also among the most reported experiences. Prioritized knowledge among dementia caregivers includes information on diagnosis, behavioral symptom management, prognosis, and end-of-life care (Lee et al., 2019). In addition, skills training in problem solving and compensatory strategy use are common and evolving needs for caregivers throughout the entire illness trajectory of dementia (Gitlin & Hodgson, 2015). Connecting caregivers with social events has also been identified as an important area for resource development (Au et al., 2015; Mausbach et al., 2011). However, “Social health” and “Self-care” do not rank as highly as other experiences in this analysis, suggesting that they may be less prioritized by caregivers to their own detriment (Cheng et al., 2019). Previous research has found significant associations between dysfunctional thoughts, activity restriction, and avoidance of experiences with caregivers’ sense of well-being (Cheng et al., 2019), suggesting a subliminally unmet need for interventions targeting caregivers’ social health.

Calls conducted through the CTRP are semi-structured around a call log that serves loosely as a guide for callers to check in on the needs of caregivers. Quantifying and ranking the most reported experiences provides a unique insight into whether needs identified by prior studies align with the experiences of caregivers in the CTRP. In a systematic review of 45 dementia caregiver needs assessments, Novais et al. found that 36% of quantitative and mixed-methods caregiver needs assessments reviewed did not explore psychological and emotional support needs of the caregiver (Novais et al., 2017) despite their being the most frequently reported experiences in this analysis. Given the high prevalence of suicidal ideation among dementia caregivers (O’Dwyer et al., 2016; Solimando et al., 2022), measures of emotional and mental health are highly recommended for incorporation into future caregiver needs assessments. Developing training for frontline providers (e.g., primary care providers, nurses, therapists, and community health workers) may be necessary to improve screening of dementia caregiving-related needs, as frontline providers are well-positioned to provide social prescriptions to start education and obtain referrals to community resources.

In summary, the most prevalent dementia caregiving-related experiences identified in calls to the Caregiver Telephone Reassurance Program (CTRP) were related to “Mental and emotional experiences,” indicating a critical need for mental health screening and support. Other experiences related to behavioral symptoms, needs for information and resources, and challenges related to arranging services and support (especially in-home respite care) were also commonly described, emphasizing the need for more evidence-based interventions to support dementia caregivers. This study recommends the incorporation of emotional and mental health measures in all future caregiver needs assessments, along with training for frontline providers to enhance screening of common concerns in research and clinical practice. Future work should explore the efficacy of telemental health services, in-home respite programs, and group-based leisure activities to decrease caregiver stress, strain, and burden and delay nursing home placement.

Strengths and Limitations

This study utilized secondary data extracted from calls made to caregivers as part of a service provided by a community-based program. As such, demographic information regarding care recipients’ characteristics (i.e., diagnosis) is incomplete. However, given the purpose and target population of the Caring for the Caregiver program, the caregivers represented in this sample were more than likely caring for a person with Alzheimer’s disease or other types of dementia. The availability of demographic characteristics was limited and excluded potentially important factors like duration of the caregiving role and financial circumstances, whose effects ought to be explored in future work. In addition, the high prevalence of “Caregiver needs for information and resources” may be an artifact of CTRP, whose services include coordination with internal resources such as educational workshops, social events, and legal/financial assistance, as well as external community resources.

“Hotline”-style telephone reassurance programs, while beneficial due to increased after-hour availability, tend to be reactive, causing usage to be centered around physical or mental health deterioration or confusions about medications (Phillips et al., 2008). Proactive, provider-initiated telephone-based approaches can preempt and avert potential crises by screening for concerning issues and addressing them through information, training, and emotional support (Lee et al., 2023). Rather than placing the onus on caregivers to recognize their need for help and initiate contact, akin to a crisis hotline, the directionality of calls made by CTRP encourage conversations that better represent the day-to-day experiences of caregivers.

Conclusion

This study provides a unique insight into the experiences of family caregivers of PLWD through an analysis of call logs documented for a telephone-based reassurance program. Family caregivers often report feeling overstretched, unequipped for their role, or unable to afford the support necessary to manage care of a PLWD at home. High stress in dementia caregiving poses risks to the mental and physical health of both caregivers and care recipients living with dementia. As the population of older adults increases, more interventions are needed for the management of behavioral symptoms of dementia, to promote knowledge and confidence in the caregiving role, to promote mental and emotional well-being among caregivers, and to connect caregivers and PLWD to care services. The experiences identified in this analysis can inform future researchers, advocates, and policymakers to increase screening for highly prevalent dementia caregiving-related concerns, develop training for frontline providers, and improve accessibility to interventions, especially telemental health and in-home respite services.

Supplemental Material

Supplemental Material - Dementia Caregiver Experiences: Insights From a Telephone-Based Support Program

Supplemental Material for Dementia Caregiver Experiences: Insights From a Telephone-Based Support Program by Thai G. H., Rivette S., Sharman J., Epps F., and Masoud S. in Journal of Applied Gerontology.

Footnotes

Acknowledgments

This work resulted from the development plan and activities of a career development award through the National Institute on Aging, a division of the National Institutes of Health, to Dr Fayron Epps (K23AG065452).

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Institute on Aging (K23AG065452).

Ethical Statement

ORCID iDs

Glory H. Thai

Fayron Epps

Supplemental Material

Supplemental material for this article is available online.

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