Aging adults with chronic conditions rely heavily on an informal network of caregivers to remain within their communities of choice. This reliance can take a significant toll on caregivers through the lens of physical and psychological problems, financial issues, and social isolation. These variables may then lead to less desirable outcomes for care recipients. This review highlights existing support services in their many forms, including: psychosocial interventions, environmental interventions, respite care, and health information technology as a method of delivery. Given the current trend with informal caregivers assuming increased responsibility in healthcare, programs and services supporting these caregivers must be understood and trialed to ensure that their needs are not overlooked.
Healthcare systems worldwide are bracing for rapidly aging populations and their many comorbid conditions. In industrialized countries, 25% of 65 - 69 year olds, and 50% of 80 - 84 year olds are affected by two or more chronic conditions that necessitate formal or informal care [
Aging adults with disabilities rely heavily on caregivers to remain within their communities of choice. This reliance may often lead to a challenging situation for caregivers, particularly the informal, through an increase of physical and mental health problems, financial issues, and social isolation [
Caregiver support services may delay nursing home admission. Delayed nursing home admission is associated with individual and societal benefits. Nursing homes are affiliated with a number of troubling outcomes such as questionable quality of care and quality of life, premature mortality, and psychological or emotional distress for families [
Informal caregivers are indispensable in addressing the needs of aging adults with disabilities and to prevent an overwhelming takeover of the built healthcare system by a chronic population. For equitable care transactions to occur between caregivers and the aging adults they serve, increased support structures may be required. Support services come in many forms including psychosocial interventions, environmental interventions, respite care, and in interventions implementing health information technology.
Psychosocial interventions may target the caregiver, the individual receiving care, or the group (dyad) as one. Regardless of the intervention target, outcome measures tend to reflect both care recipients behaviors (and/or reactions), as well as caregiver responses. Martire et al. [
Notable caregiver results included the reduced depressive symptoms in caregivers of persons with conditions other than dementia in 18 studies (p = 0.03). Additionally, interventions were reported as beneficial for mixed-groups (not exclusively spouse) of family members in 29 studies (p = 0.04). Interventions exclusively targeting the caregiver were successful in reducing caregiver depressive symptoms in 24 studies (p = 0.01). Family members reported less depression when the intervention included a relationship focus (between caregiver and care recipient) in 22 studies (p = 0.01). Family burden was decreased in 40 studies (p = 0.00), including those performed with caregivers of dementia patients. Family interventions targeting both caregiver and care recipient were successful in reducing caregiver burden in 16 studies (p = 0.01), as were the interventions targeting caregivers exclusively in 24 studies (p = 0.00). Results indicated psychosocial interventions targeting caregivers, care recipients, or both, are generally beneficial, and family interventions may be a promising approach as they provide benefit to the entire unit.
Melis et al. [
While the program generally benefited the care recipients (frail aging adults), successes were most-often tied to the caregiver living situation, where baseline distress measures were significantly higher for caregivers living with care recepients. Results indicated that psychosocial interventions targeting caregivers and care recipients may perform convincingly better in those cohabiting with the care recipient, than with alternate populations.
Another method of caregiver support through psychosocial intervention is with the provision of group therapy, or support groups. These are generally professional (social worker or similar) or peer organized sessions aimed at building rapport among participants by having discussions regarding caregiving challenges, successes, and feelings [
With increases in technology, virtual/online support groups have been implemented and tested for caregivers of aging adults with disabilities. One such study, by Marziali, Damianakis, and Donahue [
Behavioral interventions for aging adults are found most often in dementia literature, as behavioral problems are generally highlighted as the most challenging aspect of caring for persons with Alzheimer’s disease [
Environmental interventions address a number of chronic health conditions in aging adults. They are perhaps most often implemented to prevent falls in the frail elderly. These interventions are generally effective in reducing the risk of, number of, and mortality associated with falls and can understandably have a positive impact on caregiver measures [
Characteristics of the environment are particularly important considerations when caring for persons with dementia. Environmental design has been associated with agitation, aggression, depression, social withdrawal, and psychotic symptoms [
Gitlin et al. [
Results indicated that caregivers reported fewer care recipient declines (than control) in instrumental activities of daily living (p = 0.03). Intervention spouses reported reduced upset (p = 0.049) and female caregivers reported improved self-efficacy in managing behaviors (p = 0.038). Enhanced self-efficacy in managing care recipients condition was reported in women (p = 0.049) and minorities (p = 0.037). Additionally, depressive symptoms were found to be associated with low adherence to the intervention. This is an important finding as caregivers with high depressive symptoms may first need an intervention targeted at their depression, before they can participate in a meaningful trial (environmental or otherwise). Despite this finding, it is evident that simple environmental modification and training can mediate care recipient decline and caregiver burden through reducing caregiver upset and improving self-efficacy.
Respite services generally come in two forms: informally though the lending of time from family members or friends to provide the primary caregiver with a “break”, or formally though the employment of health service providers. The caregiver respite experience has been identified as a useful means for temporarily addressing negative physical and social consequences of caregiving [
Despite the positive aspects of respite, caregivers often find difficulty in seeking, or asking for their needed break. In an attempt to identify how caregivers of persons with dementia experience respite, Strang et al. [
Guilt is highlighted as a significant barrier to quality time away from the care recipient and having a plan for activities to perform while away can improve the respite outcome. Authors suggest that providers should have the ability to recognize the caregivers phase of coping. They will be more-equipped to assist them in attaining the correct services when they are needed [
There have been few quality randomized controlled trials reported on for respite interventions in the past two decades. Possible reasons for this include the ethical difficulty of controlling for the respite experience (e.g. not allowing a caregiver to have a “break”), as well as unfavorable results in past trials leading to publication bias [
Lawton et al. [
Ninety-one percent of the participants (intervention and control) reported using some respite services during the period, likely impacting the results. Results indicated no statistically significant differences between the intervention and control groups in the mortality, community status (e.g. institutionalized or not), or caregiver distress. Care recipients with dementia in the intervention group delayed institutionalisation by 22 days (p = 0.01). Caregivers in the intervention group rated themselves as “more relieved” (p < 0.01) and “more satisfied” (p < 0.05) than those in the control group, though authors suggest the differences between groups may not be clinically significant. Despite the immediate, positive impact of respite services, long term benefits are not well supported in the literature. Generally, respite services have been found to only slightly reduce caregiver strain or improve caregiver morale or satisfaction, and generally only do so while they are active [
Although adult daycare services are sometimes equated to respite care [
In another study by Zarit et al. [
Although face-to-face interventions and support groups have been implemented and successful for many, caregivers of aging adults with chronic conditions may be unable to leave the home to participate in such interventions, secondary to the nature of the disease. Three of the greatest identified barriers to support group attendance include the lack of available respite or substitute caregiver, transportation difficulties, and inconvenient locations and meeting times [
Mahoney, Tarlow, and Jones [
Eisdorfer et al. [
Support services have been described in many forms including psychosocial interventions, environmental interventions, respite care, and in interventions implementing health information technology. Psychosocial interventions targeting both caregiver and recipient are promising approaches, and the most success is found when the persons are living together. Simple environmental modification and training can compensate for early care recipient decline, aid in self-efficacy, and also lessen caregiver upset. While respite services are treasured by those who quality for and receive them, long term benefits are not well proven, as the response generally deteriorates when the dose (respite) is removed. Similarly, with adult daycare services, favorable outcomes are found when used for 2 days a week or more, though removal of the services is paired with diminished outcomes. Finally, health information technology has been found to be beneficial in group interactions for interventions such as support groups, and can bridge the gap of isolation that may result in secondary to chronic caregiving situations.
While many caregiver support services for those caring for aging adults with chronic conditions have been described, the availability and use of these services are dependent on a number of factors. Service availability, affordability, user-satisfaction, and racial and ethnic variations of utilization are additional points for consideration. Caregiver support services vary widely by region, as does the financial support available [
Continued increases in the aging population necessitate a broad public understanding of caregiver support services. With aging adults receiving the vast majority of assistance from informal caregivers, the needs of individuals assuming this role must not be overlooked in the general plan of care. While a number of caregiver interventions: psychosocial, environmental, respite, and health information technology have been implemented and tested, future studies are warranted to trial interventions with the larger and more general population of caregivers of persons with disabilities.
Informal networks of caregivers are providing an extraordinary service to the rapidly aging population with chronic conditions in the United States and abroad. The acceptance and assumption of these roles are not without consequence and often carry associated physical, psychological, and financial implications. Given the current healthcare trend in shifting patient care to families and informal caregivers, interventions must be trialed on the populations for which they are best suited to protect the priceless informal caregiver network societies who depend it.
This paper was developed, in part, from the author’s doctoral qualification exam. Acknowledgements include his doctoral dissertation committee members: Dr. William C. Mann, Dr. John Kairalla, Dr. Mary Ellen Young, Dr. Orit Shechtman, and Dr. Jamie Pomeranz.
Arthur, P.B. (2018) Informal Caregiving for Persons with Chronic Conditions: Trends and Considerations. Advances in Aging Research, 7, 78-89. https://doi.org/10.4236/aar.2018.74007