Addressing issues related to geropsychiatry and the well-being of older adults
Family caregivers of persons with Alzheimer's disease and related dementias (CADRD) play an important role in the care of their family members. CADRD often provide extensive physical, social, and emotional support over long periods, which can contribute to their own stress, strain, and poor health outcomes (Orgeta & Miranda-Castillo, 2014). In the literature, the stress, strain, and health problems related to the caregiver role are referred to as caregiver burden, which impacts financial, emotional, physical, and social dimensions (Nasso & Celia, 2007). There were >16 million family caregivers as of 2019, who provided approximately 18.6 billion hours of unpaid care (Alzheimer's Association, 2020). These caregivers provided an average of 21.9 hours per week of care (Alzheimer's Association, 2018), with approximately one third providing care for >5 years (Centers for Disease Control and Prevention [CDC], 2016). This intersection of caregiving tasks, stress, and emotional burden can place caregivers at risk of developing chronic medical conditions. These individuals experience higher rates of hypertension and cardiovascular disease and worsened immune system functioning and sleep than the general population (Alzheimer's Association, 2018). There is also substantial evidence that caregivers experience depression and anxiety at higher levels than the general population, with female caregivers at highest risk of mental health problems (CDC, 2016; Sallim et al., 2015).
Peer Services for Caregivers of Alzheimer's Disease and Related Dementias
Family caregivers have complex self-care needs but there are few targeted services to fully address these needs. Services are often fragmented and not comprehensive enough to address the multi-dimensional issues that caregivers experience (Waller et al., 2017). Recommendations for best practice interventions include telephonic support, education, skills training, multi-component programs, group therapeutic clinical approaches, problem-solving strategies, and combined peer and clinician-provided services (Greenwood et al., 2013; Waller et al., 2017).
There is a growing body of research demonstrating the value of paid and unpaid peer support to improve well-being for a variety of populations, including family members of people with mental illness, substance use disorders, or developmental disabilities, and for people living with chronic disease, including CADRD (Chinman et al., 2014; MacLellan et al., 2015). Caregiver support provided by paid peer supporters is a relatively new form of support. Peer supporters share a common bond or experience with people they help, based on their own lived experience of caregiving. They can provide support and education to help caregivers manage day-to-day struggles through face-to-face, telephone, or web-based interaction, helping caregivers overcome practical barriers and build skills to manage the burdens they often encounter. Peer support specialists share experiences to help caregivers feel less alone in their struggles, build knowledge and skills for effective problem solving and self-care, and engage with hard-to-reach populations (MacLellan et al., 2015). Peer support can reduce the sense of isolation and perception of “being alone” for caregivers (Greenwood et al., 2013), and provide emotional support and practical advice for difficult situations (Waller et al., 2017). However, there appears to be few examples of structured peer support programs for family caregivers, and little information about who is calling peer support helplines, the presenting needs of callers, or specific services provided in peer support helpline programs.
The current project's objectives included identifying emerging trends of demographic characteristics of caregivers calling a peer support helpline, most frequent concerns of callers, and service needs of caregivers over time. A retrospective cohort design was used to examine demographics of callers, presenting issues, and services provided.
Care2Caregiver, located in New Jersey, is a peer support helpline that is part of a long-standing community program providing dementia care to individuals and their families. This program is funded to serve New Jersey and originated as a result of a statewide initiative to address needs related to the growing numbers of persons with ADRD. The peer support helpline is unique because: (a) it provides assertive outreach and support for CADRD callers, and (b) it is part of an existing array of national peer support helplines based on the reciprocal peer support (RPS) approach developed at Rutgers University Behavioral Health Care. The RPS approach includes four tasks: connection; information gathering and risk assessment; case management and goal setting; and resilience, affirmation, and advocacy (Castellano, 2012).
Peer supporters develop meaningful relationships with callers to provide information and referral, and also to encourage callers to focus on self-care. They establish a relationship with caregivers that includes follow-up calls and access to resources and referrals to ensure that callers have received the support and information they requested and needed. The peer support helpline program has a staffing of two full-time Peer Support Specialists, one part-time Peer Support Specialist, and one Administrator who oversees the program operations. A requirement for the peer support specialist position is that these individuals have also been caregivers for a family member and have worked professionally with people with ADRD. This unique skill set allows them to understand callers' concerns, provide emotional support as needed, and be familiar with available services. Peer support specialists are trained in RPS (Castellano, 2012) and supervised by a mental health provider with extensive experience working with family caregivers.
Data Collection and Analysis
The project was approved as exempt status by Rutgers University Internal Institutional Review Board.
Previously collected data from call records were examined to identify (a) concerns of callers, (b) emerging demographics, and (c) service needs of caregivers over time.
The concerns of callers were identified through pre-existing call center reports between 2015 and 2018 from the call center peer support specialist, including brief call notes. These qualitative lists of concerns were summarized and condensed into a list of frequent themes by two authors (M.Z., M.S.), and a count made of these concerns to calculate a sum of total concerns. Callers may have presented with multiple problems during the call. In addition, the average number of calls per concern was calculated by dividing the number of contacts per issue, or the number of times this issue came up during calls, by the number of unique callers per issue.
Annual aggregated demographic reports for the call center were collected for 4 years (2015 to 2018) to identify emerging demographic trends within the callers over time. Proportions were calculated for demographic characteristics and a chi-square test of homogeneity was calculated to identify any significant changes over the 4-year time frame or any trends that may need to be addressed as the program continues.
Demographics of Callers
The program served a total of 1,860 unduplicated callers between July 2015 and November 2018, with 14,227 incoming calls during this time period, which increased steadily from 2,332 calls in 2015 to 4,342 calls in 2018 (mean = 3,557 calls per year). Despite the increase in calls per year, the ratio of female to male caregivers remained constant at 4:1. Peer support specialists made 27,894 calls to, or on behalf of, callers to provide follow-up care (mean = 6,974 calls per year).
Callers were mostly from New Jersey (94%), where the program is housed. Marital status remained essentially the same over time, with approximately 70% married, 10% single, and 8% widowed. The age of callers was also consistent across the 4 years, with most callers in the 45- to 60-year-old age group. There was, however, an increase of 6% in the proportion of callers in the 66-to 75-year-old age range, which did not reach statistical significance (α = 0.10). The proportions of callers in the 25- to 34-year-old and 35- to 44-year-old age ranges decreased by approximately 6% and 2%, respectively. Thus, the proportion of older callers increased over time, and the proportion of younger callers decreased.
Concerns of Caregivers
Most callers reported experiencing stress (43%) and being overwhelmed with caregiving responsibilities (30%). Across the 4-year period, more than one third (35%) of callers called with concerns regarding their own well-being (e.g., anxiety, depression, loss grief, posttraumatic stress, trauma, sleep issues, loneliness/isolation, anger). Caregiver well-being calls increased each year, rising from 27% in 2015, to 33% in 2016, and continuing to rise in 2017 (37%) and 2018 (42%).
Callers with subjective caregiver burden issues (e.g., caregiver issues, multiple caregiver issues, safety) and concrete objective burden issues (e.g., medical services, medical referral, limited mobility, medical appointments) comprised 15% of calls, on average, which remained consistent over time. Callers also reported medical issues for either themselves or the care recipient (10%); however, the percentage of this issue rose somewhat over time from 6% in 2015 to 10% in 2018. Issues with other family members were also common concerns, averaging 7% of calls across the 4-year span.
Service Needs of Caregivers
Peer support services were identified as the most frequent service provided to callers, increasing from 37% in 2015 to 42% in 2018. These services are based on RPS tasks, which include connecting to offer emotional support and build resilience, case management to assist with accessing resources, and advocacy to help callers access needed resources and supports.
Peer-provided information and referral services or general information and referral to community supports offered by the peer support specialists were offered to approximately 40% of callers; this percentage decreased over time from 48% in 2015 to 32% in 2018. Electronic services, including email and chat, averaged 7% of services provided, increasing between 2015 (6%) and 2018 (10%). Access to clinical services, including referral to mental health assessment and counseling services, comprised 6% of total services over the 4 years of service. Appointment management, or supporting callers to manage their own health care, were the smallest percentage of total services provided (2%), which remained constant over the 4 years of the system.
Callers were predominantly women between the ages of 45 and 65 (90%) living with and caring for a family member age ≥66 years. Observations from the data indicate that callers are growing older and most often reach out for assistance for issues related to stress and factors impacting emotional well-being. In particular, the callers from this program shared concerns about grief and anger related to the experiences of caregiving.
Callers were most often provided peer support in the form of education regarding self-care strategies, coping strategies, and information. Based on the peer support specialist brief notes, it appears that the peer supporters followed the RPS tasks of connection, case management, and advocacy (Castellano, 2012). The connection between the caller and peer support specialists created a strong bond, with callers referring other CADRD to the helpline.
It appears that the connection the peer supporter provides is an essential component of the peer support relationship. Peer support specialists offer a form of case management and advocacy by assisting callers in linking to available physical health providers, as well as supporting them to follow up with their medical care. This unique proactive health approach may offer additional motivation to CADRD by having a person with similar caregiving experience support another peer to address health challenges by offering practical strategies, encouragement, and affirmation. A shared experience of caregiving helps facilitate a bond between peer support specialists and caregivers, which can reduce the sense of isolation many caregivers experience (Greenwood et al., 2013). Peer support specialists support may assist in building resilience, which is critical for caregiver well-being. Other recent work examining online posts of CADRD in mutual help online groups suggests that caregiver burden remains a challenge and that support from peers is often sought when coping with difficult situations (Scharett et al., 2017).
Implications for Nurses
Nurses are vital to improving the health and well-being of CADRD and can play an important role collaborating with peer support specialists to address the holistic needs of CADRD. Examples of possible collaborations could include the development of nurse and peer support specialist partnerships to expand the focus on the high risks for morbidity, such as offering in-home support visits with peers and nurses together to encourage and support healthy lifestyles. The addition of a nurse consultant may offer peer support specialists valuable education and consultative support so they can provide better support for callers' concerns.
Nurses can also offer services to link CADRD to prevention and disease management community programs, whereas peer support specialists provide motivation and encouragement for CADRD to follow up with treatments and services. Nurses and peer support specialists could collaborate to assess care needs of persons with ADRD while offering emotional support to caregivers. Finally, nurses and peer support specialists could co-facilitate support groups on a variety of self-care for health topics relevant to caregivers. Additional efforts to examine proximal and distal outcomes for peer provider services for caregivers, including objective measures of emotional and physical well-being and qualitative perceptions of caller experience, should be explored in the future.
Information gleaned from this analysis suggests that peer support specialists for CADRD can offer services with a unique perspective and valuable skills that have a potential to improve the lives of CADRD. Caregivers' well-being is a significant concern, with approximately one third of callers indicating challenges in this area, especially those related to traumatic events, interfamily issues, and multiple caregiving responsibilities. Research on peer support specialists for CADRD is needed to examine the benefits on well-being for CADRD and care recipients. Future research could explore specific types of services requested and offered to better understand what issues are most pressing for caregivers and to tailor specific interventions for CADRD who experience multiple challenges (e.g., providing care for multiple people, trauma or substance use, chronic health conditions, other social determinant barriers). As the number of people with ADRD and their caregivers increase, nurses can make important contributions by partnering with peer support specialists to address the practical and emotional support needs and self-care challenges faced by CADRD.
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