Accepted Manuscript Caregiving Brent T. Mausbach, PhD PII:

S1064-7481(14)00137-7

DOI:

10.1016/j.jagp.2014.04.007

Reference:

AMGP 371

To appear in:

The American Journal of Geriatric Psychiatry

Received Date: 18 April 2014 Accepted Date: 23 April 2014

Please cite this article as: B.T Mausbach, Caregiving, The American Journal of Geriatric Psychiatry (2014), doi: 10.1016/j.jagp.2014.04.007. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

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Caregiving

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Department of Psychiatry, University of California San Diego

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Brent T Mausbach, PhD

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Send correspondence to: Brent T Mausbach, PhD. Department of Psychiatry (0993), 9500 Gilman Drive, La Jolla, CA 92093-0993. E-mail: [email protected].

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It is well known to the readers of this journal that the United States is undergoing a series of demographic shifts that will present challenges to those of us who work in geriatric

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psychiatry and gerontology. As reported by the Congressional Research Service (CRS), the United States is “getting bigger, older, and more diverse” (1). With these shifts brings about a rise in the diversity and number of individuals suffering from dementia, as well as in the

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number of family caregivers who will be responsible for their care (2). As has been reported in this journal and elsewhere, caring for a family member with dementia is a highly stressful

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experience that has potential consequences to both mental and physical health (3-6). Therefore, as a matter of improving the overall well-being of caregivers, there is continual need for scientific discoveries that enhance our abilities, as geriatric mental health specialists, to adequately assess, understand, and treat caregiver distress. The current issue of the American

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Journal of Geriatric Psychiatry brings together four research articles showing the broad spectrum of caregiving discoveries related to these important clinical issues. In the first article, Boorson et al. (7) discuss the Dementia Services Mini-Screen, a rapid

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assessment tool which combines caregiver stress and patient behavior problems to identify caregiver-care receiver dyads with high service needs. As described in their article, the US

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Department of Health and Human Services developed a national plan to address Alzheimer’s Disease (AD). Among its 5 goals, the National Alzheimer’s Plan calls for an expansion of supports for people with AD and their families, such as improving the quality and coordination of care for persons with dementia and their family caregivers. However, to achieve this goal, it is important for front line providers (e.g., primary care physicians) to more easily and rapidly identify which of their consumers is in high need for such services. Existing questionnaires that

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could be used for such purposes can be both time-consuming or yield information that is too complex to use in front-line medical settings. In contrast, the Dementia Services Mini-Screen is

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a simple screening tool that front-line providers can use to identify consumers with high psychosocial and medical needs. Specifically, the mini-screen asks caregivers to indicate if their loved-ones exhibited each of 5 behavioral disturbances: 1) anger/hostility, 2) visual/auditory

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hallucinations, 3) irritability, 4) suspiciousness/paranoia, and 5) severe social withdrawal.

Endorsement of 2 or more of these behaviors was found to predict need for psychosocial

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services, including direct caregiver support and/or referral, companion care, overnight respite care, adult day health or activities, personal care for the care recipient at home, meal preparation, chore help, and legal advice.

In addition to answering questions pertaining to the care receiver’s (CR’s) behavior

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problems, caregivers were asked a single question about their current level of perceived stress, with response options ranging from 1 (not at all) to 5 (extremely). Caregivers who reported high levels of stress (i.e., 4 or 5 on the stress scale), and who reported 2 or more CR behavior

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problems, were found to have greater need for medical services. These included services aimed at the caregiver, such as initial education and counseling about dementia, prescription of

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medication for caregiver stress or depression, and caregiver hospitalization; as well as services aimed at the CR such as prescription of medication for mood or behavioral problems, patient hospitalization, enrollment in home health care, admission to hospice, and admission to a nursing home. Thus, via a very brief questionnaire that can be administered in 1-2 minutes, the Dementia Services Mini-Screen offers clinicians a useful tool to screen for potential need of psychosocial and/or medical needs on the part of the caregiver/receiver dyad.

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So what is the prevalence of high burden in caregivers? And what caregiving-related factors potentially contribute to high burden? The second article by Brodaty and colleagues (8)

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addresses these questions. They administered the Zarit Burden Interview (ZBI), a commonly used scale of caregiver burden (9), to 732 caregivers whose loved ones with dementia were attending memory clinics in Australia. Two follow-up assessments (6-months and 12-months)

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were conducted to determine caregiver burden over time, and a number of variables were used to predict burden across time. Results showed that half of caregivers had at least mild-to-

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moderate burden at baseline, and by the 12-month assessment this rose to 58% of the sample. In addition, the authors found that the proportion of caregivers with severe burden increased over the 12-month period from 14.7% (at baseline) to 22.8%. These base-rates underscore the high rates of stress experienced by caregivers, as well as the need for adequately identifying

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who may be at risk for such high levels of burden. Thus, via regression analyses, Brodaty and colleagues found that caregivers managing more behavioral and psychological symptoms of dementia (BPSD) were at greatest risk of burden over time, as well as caring for more

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cognitively impaired loved ones. Further, more rapid functional decline on the part of the CR was associated with greater burden over time for the caregiver. These findings all provide

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metrics for clinicians to consider when evaluating which of their clients is at risk for high levels of burden over time, as well as how they may make appropriate referrals for psychosocial and medical services that may potentially prevent or ameliorate future burden on the part of their caregiver clients. In addition to caregiver burden, depression is a common consequence of caregiving, and reduction of depressive symptoms is an important and commonly targeted outcome in

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caregiver interventions (10, 11). Further, increased depressive symptoms have been linked to a variety of health-related outcomes, including increased medical service use (12) and risk for

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physical health complications (13). Thus, it is important to identify individuals who are at risk for depression so that resources can be allocated earlier to those in need. The third article in this series tackles the issue of predicting future onset of elevated depressive symptoms.

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Capistrant, Berkman, and Glymour (14) examined longitudinal depression in more than 9,000 married and depression-free individuals aged 50 and over who enrolled in the Health and

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Retirement Study (HRS). Results of their analyses indicated that current caregivers (i.e., those providing 14 or more hours of care at any particular assessment) and “long-term” caregivers (i.e., those providing 14 or more hours of care for two consecutive biennial surveys) were at nearly twice the risk of elevated depressive symptoms than non-caregivers. Interestingly, length

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of caregiving did not increase the risk of depression. It appears, then, that left to their own devices, caregivers are not adapting to their roles over time. Rather, they appear to remain at risk for elevated depressive symptoms over time, highlighting the need for services that can

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effectively help prevent or reduce depressive symptoms. Given that caregiving is associated with high levels of distress, and there is potentially

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high need for services among caregivers, what can be done to help? This brings us to the fourth and final article in this series. Garand et al (15) examined the efficacy of Problem-Solving Therapy (PST) for caregivers of individuals with a new diagnosis of Mild Cognitive Impairment (MCI) or dementia. Primary outcomes in this study were depressive and anxious symptoms. Participants were randomly assigned to receive PST or an attention-control condition, which focused on providing education about nutrition (NT). Participants in both conditions initially

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received 6 face-to-face sessions (90 minutes each) in their homes, with sessions occurring approximately 2 weeks apart. Following these sessions, participants received three telephone

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contacts (approximately 2 weeks apart; 45 minutes each) to reinforce principles taught during the initial sessions. As its name implies, PST helps caregivers systematically develop and test problem-solving strategies pertaining to challenging issues they are facing as caregivers. As

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described in their article, this involves helping caregivers: 1) write a clear description of the problem, 2) set realistic goals, 3) brainstorm solutions, 4) list pros and cons of each solution, 5)

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choose a solution, 6) develop an action plan, and 7) evaluate progress. Generally, results for depression and anxiety outcomes indicated that PST was superior to NT. Specifically, depressive and anxious symptoms showed greater improvement for participants in PST relative to participants in NT. However, an interesting 3-way interaction emerged for depressive

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symptoms that involved diagnosis-type. Specifically, caregivers of patients with MCI who received PST showed stable depression levels over time. However, caregivers of patients with MCI who received NT showed increased depression over time. However, among caregivers of

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new dementia patients, PST was associated with reductions in depression levels over time, whereas NT participants had stable depressive symptoms over time. This is important since it

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shows that depression can be reduced in active dementia caregivers, as well as prevented in those who are relatively early in the caregiving trajectory. A further implication of this study is that it encourages future researchers to examine the efficacy of their interventions for caregivers at individuals at varying stages of dementia. In addition to reminding us of the heavy burden of caregiving, these 4 articles continue to highlight the need for novel information on how to better identify at-risk caregivers, assess

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their needs, and provide them with services that will help reduce this burden. In addition, these articles provide useful information to a broad spectrum of researchers and clinicians alike; from

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geriatric specialists to those working within families across the age spectrum, for individuals working in primary care and for those in community-based settings. It is my sincere desire to see these articles help transform and improve the care that caregivers and their families

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receive, both now and in the long-term future.

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Washington, DC, Congressional Research Service, 2011. Retrieved 4/1/2014 from http://www.fas.org/sgp/crs/misc/RL32701.pdf 2.

Thies W, Bleiler L,Alzheimer's Association: 2013 Alzheimer's Disease facts and figures.

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cardiovascular disease in dementia caregivers. Health Psychol 2007; 26:539-544 Capistrant BD, Berkman LF,Glymour MM: Does duration of spousal caregiving affect

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