Epidemiology of Aging: Racial/Ethnic Specifi c Disease Prevalence
9.6 Interventions
Over the last 20 years, multiple studies have evaluated the effectiveness of targeted interventions on caregiver experience. Table 9.1 describes a sample of recent inno- vative interventions and their outcomes. Overall, most interventions focused on improving support and education have a positive effect on reported caregiver stress and burden [ 28 ]. Many caregiving interventions include multiple treatment ele- ments aimed at addressing several problems. Multicomponent interventions deliv- ered in high doses are generally more effective than more narrowly targeted interventions [ 40 , 41 ].
One of the most comprehensive studies in the United States was the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) initiative established in 1995 and funded by the National Institute on Aging and the National Institute of Nursing Research. The study was carried out in two phases. In Phase I (REACH I), multiple different interventions were tested at six sites in the United States to iden- tify promising approaches to decrease caregiver stress and burden. These are described in Table 9.2 . Overall results from the study showed that active treatments were superior to control conditions in reducing caregiver burden and that active engagement in skills training had the greatest impact in reducing caregiver depres- sion, as compared to passive methods such as providing information [ 42 ]. Breakout analysis indicated that the effectiveness of the various treatment strategies varied according to the ethnic or cultural background of the caregiver. Phase II (REACH II) was a multisite randomized control trial that tested a structured multicomponent intervention on quality of life and clinical depression in caregivers and on rates of institutional placement of care recipients in three diverse racial and ethnic groups.
An intensive intervention involved a range of strategies, including provision of information, didactic instruction, role playing, problem solving, skills training, stress management techniques, and telephone support groups, and was tailored to the care givers needs and individual risk profi le. White and Hispanic caregivers in the intervention group experienced signifi cantly greater improvement in quality of life than those in the control group. African American spouse caregivers also improved signifi cantly more. Prevalence of clinical depression was lower among
Table 9.1 Sample caregiver interventions and outcomes Intervention Intervention description
Caregiver
description Outcome CHESS
(Comprehensive Health Enhancement Support System) [ 50 ]
Web-based lung cancer information,
communication, and coaching system for caregivers
CG of patients with advanced NSCLC
Lowered burden Lowered negative mood Nonsignifi cant effect on disruptiveness Videophone
psychosocial intervention (feasibility study) [ 51 ]
In-home technology- based multicomponent psychosocial intervention
Minority family CG of dementia patients
Decrease reported CG burden
Increased perception of social support Increased positive perceptions of the caregiving experience No effect for depression Mindfulness-based
Stress reduction (MBSR) compared to a community caregiver education and support (CCES) intervention [ 52 ]
8 weekly intervention sessions and home- based practice (MBSR) or a
Caregivers of dementia patients
MBSR more effective at improving overall mental health, reducing stress, and decreasing depression than CCES Both interventions improved caregiver mental health and were similarly effective at improving anxiety, social, support, and burden
Complementary and Alternative Medicine (CAM) intervention [ 53 ]
8 sessions of Polarity Therapy (PT) (type of touch therapy) compared to an enhanced respite control condition (ERC)
American Indian caregivers of dementia patients
PT participants improved signifi cantly more than ERC participants measuring perceived stress, depression, bodily pain, vitality, and general health
“Coping with Caregiving” [ 54 ]
4 month cognitive/
behavioral small group intervention compared to a minimal telephone- based control condition
Non- Hispanic white and Hispanic
Caregivers (regardless of race) reported greater improvement in depressive symptoms, overall life stress, and caregiving- specifi c stress Latino female
caregivers of elderly relatives The NYU Caregiver
Intervention (NYUCI) [ 55 , 56 , 57 , 58 ]
20-year longitudinal randomized controlled trial that included 406 spouse caregivers.
Intervention focused on improved family support and continuous availability of a counselor
Spouse caregivers of dementia patients
Intervention alleviated the deleterious effects of caregiving on mental and physical health of spouse caregivers and postponed or prevented nursing home placement of AD patient spouse
Table 9.2 REACH study from [ 42 ])
REACH (Resources for Enhancing Alzheimer’s Caregiver Health)
Site Intervention description Site-specifi c outcome
Birmingham Skill Training Condition —Problem-solving training designed to increase caregivers’ ability to manage care recipients’ behavioral excess and defi cits, and to increase caregivers’ ability to cope with these and other daily stressors.
Control : Minimal Support Condition—
Telephone-based minimal intervention that provides caregivers with contact and support such as active listening and empathy and written information about dementia and caregiving
Behavioral skills training intervention showed differential effects for African American and nonspouse caregivers with each of these groups showing greater benefi ts than comparison groups of White and spousal caregivers, respectively
Boston ) REACH for TLC (Telephone Linked Computer) System —Telephone-based intervention designed to reduce caregiver stress. The system provides automated monitoring of caregiver stress levels, a voice-mail caregiver bulletin board, an ask-the- expert call option, and care recipient behavioral distraction to reduce disruptive behaviors. Control : Usual Care—Caregivers receive written information on dementia caregiving and referral resources
Wives who exhibited low mastery and high anxiety benefi ted the most from an automated telecare intervention
Memphis Behavior Care —Caregivers receive written information plus skills training and materials in patient behavior management (periodic consultations and phone calls with behavior management interventionist to manage care recipients’ behaviors). Enhanced Care — Caregivers receive written information and skills training plus behavioral modifi cation strategies to decrease stress for the caregiver (relaxation training, coping strategies). Control : Usual Care (Information and Referral)—Caregivers receive written information on dementia caregiving and referral resources
A long-term education intervention based on a primary care setting was effective in reducing caregiver stress and burden
Miami ) Family-based Structural Multi-system In-home Intervention (FSMII) —In-home family systems therapy designed to reduce caregiver’s distress of managing and living with care recipient, and enhance family functioning. FSMII + Computer Telephone Integration System (CTIS) —Designed to augment FSMII with a computerized telephone system. The CTIS system is used to facilitate communication among the therapist, caregiver, family, and other support systems by providing messaging, conferencing, access to prestored information, and respite functions.
Control : Minimal Support Condition—
Telephone- based, minimal intervention that provides caregivers with contact and support such as active listening and empathy and written information about dementia and caregiving
Caregivers in the combined family therapy and technology intervention experienced a signifi cant reduction in depressive symptoms at 6 months. The 18-month follow-up data indicated that the
intervention was particularly benefi cial for Cuban American husbands and daughter caregivers
(continued)
caregivers in the intervention group, and there was no statistically signifi cant differ- ence in institutionalization at 6 months ( p = 0.118) [ 43 ]. Results from REACH II intervention suggested that the enhanced supportive intervention (REACH II) led to signifi cant improvement in caregivers’ overall perceived health at 6 months [ 44 ].
Six hundred and forty-two caregivers completed the Positive Aspects of Caregiving (PAC) scale as part of their participation in REACH II. Overall PAC scale scores indicated that both Hispanics and African Americans experienced more PAC than Whites. African Americans reported that caregiving gave them “a more positive attitude toward life” and enabled them to “appreciate life more” than either Whites or Hispanics ( p < 0.004) [ 45 ].
Programs that provide respite care vary in use among minorities. Although eth- nic minorities identify the need for increasing assistance and respite as patients (especially those with cognitive impairment) need more assistance with ADLs and IADS, the use of such government programs, i.e., state Medicaid or the Veteran Administration, varied widely among minorities groups. In one study it was shown that increasing patient need variables (i.e., services that caregivers identifi ed as not able to provide at home) infl uenced use of respite for Hispanics but were not the primary drivers for African American use of respite [ 46 ].
Table 9.2 (continued)
REACH (Resources for Enhancing Alzheimer’s Caregiver Health)
Site Intervention description Site-specifi c outcome
Palo Alto ) Coping With Caregiving Class — Psychoeducational class designed to teach caregivers coping and mood management skills.
Enhanced Support Group —Support group patterned after local community support groups (standardized meeting frequency, duration, length of time in group, and educational materials).
Control : Minimal Support Condition—
Telephone- based, minimal intervention that provides caregivers with contact and support such as active listening and empathy and written information about dementia and caregiving
Improved coping among female caregivers who participated in an intervention designed to enhance skills for managing distress
Philadelphia Environmental Skill-building Program —Home- based intervention that provides caregivers with skills and technical support to modify the home to manage excess care recipient behaviors.
Problem areas addressed may include managing ADLs, excess agitation, wandering or
incontinence, and caregiver need for respite.
Control : Usual Care—Caregivers receive written information on dementia caregiving and referral resources
Environmental skill-building intervention resulted in less upset with memory-related behaviors and better affect in intervention caregivers when compared with individuals in the control condition. Also, women in intervention tended to benefi t more than men did in areas of mastery and ability to manage daily caregiving tasks
Informal caregiving support is defi ned as support primary caregivers receive from families and other individuals within their social network. The studies con- cerning the importance, reception, and access to informal support vary. One study found no difference between informal support between African Americans and Hispanics [ 3 ]. One study found the Korean caregivers had more extended family support than their Caucasian counterparts but not more emotional support [ 47 ].
White male caregivers were more likely to receive emotional support from adult children and to receive practical assistance from formal sources compared with other types of support and compared to other race-gender caregiver groups [ 48 ].
Another study which focused on Puerto Rican caregivers (Elder Project in MA) reported that sons more so than daughters report stronger fi lial responsibility to their aging parents, but they were less likely to have access to or be offered or seek out support [ 49 ]. However, one study did not show that race affected support group attendance, receiving information or talking with referral services. This was par- ticularly true for caregivers of Alzheimer’s patients [ 3 ].