QUICK LESSON ABOUT. Dementia: Impact on Nonprofessional Caregivers. Description/Etiology

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1 QUICK LESSON ABOUT ICD ICD-10 F03.90 Authors Chris Bates, MA, MSW Cinahl Information Systems, Glendale, CA Jessica Therivel, LMSW-IPR Cinahl Information Systems, Glendale, CA Reviewer Lynn B. Cooper, D. Criminology July 31, 2015 Dementia: Impact on Nonprofessional Caregivers Description/Etiology Neurocognitive disorders (previously called dementia disorders)have a profound impact not only on the lives of those with the disorders but also on the persons caring for them. (For more information on dementia/neurocognitive disorders, see Quick Lesson About Dementia Disorders.) Generally, caregivers fall into two categories: professional caregivers, also referred to as healthcare, formal, or clinical caregivers; and nonprofessional caregivers, also referred to as lay, family, or informal caregivers or carers. The primary distinctions are that the former are paid for their services and have at least some formal training whereas the latter are not paid and generally learn on the job. A primary responsibility of professional caregivers is to educate and support nonprofessional caregivers, who may experience emotional, physical, financial, spiritual, and cultural stress related to caregiving. Considerable research has been conducted into the role of coping and resilience as personal characteristics that enable family caregivers to effectively engage in long-term caregiving and mitigate its impact on their own lives. Coping is a strength that is apparent at a specific moment in time and manifests as the development of strategies to manage or eliminate elements of a life situation that have negative impacts on the caregiver. Coping is the management of day-to-dayevents. Different coping strategies are grouped into three areas of focus: task, emotion, and avoidance. Task strategies are action-oriented and aim to resolve the problem so as to decrease or remove the stressful element; emotion-focusedstrategies address distressing emotional states; and avoidance strategies aim to avoid the cause(s) of the stress and negative influences. Resilience is defined as successfully adapting to negative life events;it includes maintaining hope and an expectation of positive outcomes during distressing events as well as overcoming and recovering risks associated with the current negative life events. More colloquially, resilience is the ability to bounce back: it is about long-termoutlook. For caregivers of those with neurocognitive disorders, risk factors that may overwhelm coping strategies or test resilience may be physical (e.g., the physical demands of dealing with a patient s aggression or assisting with tasks such as bathing), emotional (e.g., distress because of the illness of a life partner or anger about the loss of caregiver s independence), financial (e.g., costs of care or loss of income due to caregiving instead of working for pay), or time stressors (e.g., adding caregiving to an already full life or being in the sandwich generation : caring for aging parents while raising one s own children). The degree to which caregivers are able to develop effective coping strategies in the face of risk factors predicts caregivers resilience. Given the progressive and often long-term nature of neurocognitive disorders, resilience is an important quality for family caregivers. Each caregiving situation is unique and is likely to change over the course of the affected individual s neurocognitive disorder. However, there are some issues and concerns that occur more often than others and to which professional members of the ecosystem should be particularly alert. Norms and assumptions about the duties and responsibilities of providing care to older adult family members vary across cultures and across generations within families. Some cultural norms may reject assistance from outside the family, yet there may be disagreement within a family about the obligation to provide care at the expense of the caregiver s own desires. Related to assistance from outside the family is the increasing availability and evolution of online and assistive technology resources (e.g., guidance lighting, smart floors that detect falls, GPS for locating individuals who wander, online Published by Cinahl Information Systems, a division of EBSCO Information Services. Copyright 2015, Cinahl Information Systems. All rights reserved. No part of this may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher. Cinahl Information Systems accepts no liability for advice or information given herein or errors/omissions in the text. It is merely intended as a general informational overview of the subject for the healthcare professional. Cinahl Information Systems, 1509 Wilson Terrace, Glendale, CA 91206

2 support groups for isolated caregivers). Primary caregivers who are themselves older may need additional assistance with unfamiliar technology. By nature, neurocognitive disorders are progressive and thus entail many changes and transitions. A transition that may be particularly difficult for family caregivers is the move of the loved one from home care to a facility, if this becomes necessary. This transition results in changes in family caregivers roles and responsibilities and may give rise to feelings of failure or other strong emotions, including loss and grief. Loss and grief may in fact accompany the whole progression of the loved one s disorder as the caregiver experiences loss of conversation with her or his life partner/confidante, for example, or loss of independence as her or his life becomes increasingly devoted to caregiving. Facts and Figures Worldwide, in 2015 approximately 47.5 million people were living with the diagnosis of dementia, a number that is projected to increase to 75.6 million by 2030 (World Health Organization, 2015). It is estimated that 5.3 million Americans have Alzheimer s disease, two thirds of whom are women (Alzheimer s Association, 2015). Costs of care for persons in the United States with Alzheimer s disease were estimated at $226 billion in 2015 with about half of those costs being covered by Medicare (Alzheimer s Association, 2015). In 2014 in the United States 15.7 million friends and family members provided 17.9 billion hours of unpaid care to an individual with Alzheimer s or another dementia; three quarters of these caregivers reported being somewhat to very concerned about their own health since becoming a caregiver (Alzheimer s Association, 2015). Depression and anxiety are common among caregivers of individuals with neurocognitive disorders. Researchers in the Netherlands found that over a 2-year period almost 60% of the caregivers they studied developed an anxiety or depressive disorder; caregiver health problems were determined to contribute to an increased risk for anxiety or depressive disorders (Joling et al., 2015). Risk Factors The risk factor is caring, in any capacity, for an individual with a neurocognitive disorder. Even those with a secondary role in caregiving may experience some of the stress factors of caregiving. Signs and Symptoms/Clinical Presentation Specific signs and symptoms of distress by the family caregiver(s) will vary and will be unique to each situation. Inadequate or inappropriate caregiving skills and coping mechanisms indicate a need for education and/or support. In general, stress, depression, grief, avoidance, isolation, or neglect or abuse of the individual being cared for should alert the professional caregiver to the need for increased support or active intervention. Social Work Assessment Client History Standard biopsychosocialspiritual assessment, formally or informally as the professional works with the caregiver Observations of skill levels, coping mechanisms, and resilience level of the family caregiver Collateral information from family, friends, and coworkers to increase network of support Relevant Diagnostic Assessments and Screening Tools Marwit and Meuser Caregiver Grief Inventory (MM-CGI) Burden Scale for Family Caregivers (BSFC) Multidimensional Scale of Perceived Social Support (MSPSS) Caregiver Competence Scale (CCS) Positive Aspects of Caregiving Scale (PACS) Laboratory Tests of Interest to the Social Worker Generally there are no laboratory or diagnostic tests for caregivers administered by the social worker Social Work Treatment Summary Caregivers of individuals with neurocognitive disorders typically need education and support as the loved one s disorder progresses through its stages. Caregivers may also need to seek mental health counseling if issues arise as a result of caregiving. Treatment may become necessary if the caregiver s ability to function, both as a caregiver and in her or his own daily life, becomes affected to the point of disruption of social or occupational functioning. Social workers should be aware of their own cultural values, beliefs, and biases and develop specialized knowledge about the histories, traditions, and values of their clients. Social workers should adopt treatment methodologies that reflect their knowledge of the cultural diversity of the communities in which they practice.

3 . Problem Goal Intervention Caregiver of an individual with a neurocognitive disorder lacks information about the disorder Caregiver is experiencing negative psychosocial symptoms and is exhibiting signs of stress, anxiety, and/ or depression. Caregiver will be informed about neurocognitive disorder of his or her loved one Caregiver will have improved functioning Provide factual information and emotional support to caregivers; educate family and caregivers about neurocognitive disorders, including likely progression and development of a longterm care plan. Provide referrals to peer-based support groups Reduce negative impact of caregiving to restore coping skills and reestablish ability to provide care; this might include referral to mental health professional for treatment of depression or anxiety; arranging for respite care; connecting caregiver to community services to assist with caregiving burden; finding the caregiver a support group or enhancing existing support system Applicable Laws and Regulations Each jurisdiction (e.g., nation, state, province) has its own standards, procedures, and laws for involuntary restraint and detention of persons who may be a danger to themselves or others. Individuals with neurocognitive disorders may become aggressive or may lose the ability to care for themselves, at which point consideration may have to be given to involuntary care. Consideration should also be given to the legal ramifications of loss of executive functioning as it impacts medical decision-making as well as general power of attorney for life-changingdecisions (e.g., wills, sale of assets, entering extended-care facilities). Individuals with neurocognitive disorders are at higher risk than their peers for abuse (including financial abuse) and neglect, so those involved in their care should be familiar with local reporting agencies and procedures. Locally applicable rules and regulations for suspension or removal of driver s licenses should also be considered. Caregivers may need assistance with decisions that have legal ramifications, including timing of invoking power of attorney. Each country has its own standards for cultural competency and diversity in social work practice. Social workers must be aware of the standards of practice set forth by their governing body (e.g., National Association of Social Workers in the United States, British Association of Social Workers in England) and practice accordingly. Available Services and Resources Enter dementia caregiver or caregiver in the search box to access relevant information available on each website. Alzheimer s Association (alz.org): Caregiver Action Network (CAN): Alzheimer s Disease International: National Association of Social Workers (NASW): AARP Caregiving Resource Center: The Environment and Health Group, Inc. developed to serve as a source of bilingual (English and Spanish) information on dementia and caregiving issues

4 Food for Thought After caring for her mother, who had dementia, Ellen S. Stevens-Roseman, a social work educator specializing in gerontology, wrote an article (Stevens-Roseman, 2009) distilling her academic expertise and her practical experience of caring into 11 tips for family caregivers. The tips are: Write down the (daily) plan Lay out (a limited number) of choices Request the elder s help (with tasks he or she has always done) Have something to do (e.g., reading, knitting) while awaiting the elder Walk away if nearing boiling point Encourage physical activity: it can help the elder s emotional state Take a time out (to do something you enjoy) Use help in the community (e.g., adult daycare) and in the home While the elder is able to, help the elder to do what is important to her or him Notice personality traits that are still part of the elder Don t do too much Red Flags Aggression is a common behavior problem exhibited by individuals with neurocognitive disorders and has a negative impact on caregivers quality of life. Common triggers for aggression include having unidentified needs and resulting frustration, pain, reduced vision and hearing, environment changes, excessive noise, limited privacy, decreased quality of relationship with the caregiver, and aggression from the caregiver (Wharton & Ford, 2014) Caregiving needs can be more complex and numerous for caregivers in rural areas when compared to those of caregivers in urban areas. Accessing resources may be more difficult in rural settings as a result of distance and transportation issues. Persons in rural areas have lower average incomes and education levels, which can also impact caregiving (Samia et al., 2014) Discharge Planning Review medication regimen if prescribed for caregiver Provide referrals for support groups for caregivers, including bereavement groups Provide education to family members about neurocognitive disorders and their progression Discuss medical decision-making and power of attorney Establish a long-term care plan with the affected individual and family caregivers in anticipation of changes in needs, including need for respite care Review safety considerations of both the individual with a neurocognitive disorder and the caregiver, including driving References 1. Alzheimer s Association. (2015, March) Alzheimer s disease facts and figures. Retrieved April 24, 2015, from 2. Brannelly, T. (2006). Negotiating ethics in dementia care: An analysis of an ethic of care in practice. Dementia, 5(2), British Association of Social Workers. (2012). The Code of Ethics for Social Work: Statement of Principles. Retrieved May 29, 2015, from 4. Cassie, K. M., & Sanders, S. (2008). Familial caregivers of older adults. Journal of Gerontological Social Work, 50(1), doi: / Chapman, D. G., & Toseland, R. W. (2007). Effectiveness of advanced illness care teams for nursing home residents with dementia. Social Work, 52(4), Chene, B. (2006). Dementia and residential placement: A view from the carers perspective. Qualitative Social Work, 5(2), Chiu, T., Marziali, E., Colantonio, A., Carswell, A., Gruneir, M., Tang, M., & Eysenback, G. (2009). Internet-based caregiver support for Chinese Canadians taking care of a family member with Alzheimer disease and related dementia. Canadian Journal on Aging, 28(4), doi: /s Emilsson, U. M. (2008). Identity and relationships: On understanding social work with older people suffering from dementia. Journal of Social Work Practice, 22(3), Gaugler, J. E., Reese, M., & Sauld, J. (2015). A pilot evaluation of psychosocial support for family caregivers of relatives with dementia in long-term care: the residential care transition module. Research in Geronotological Nursing, doi: / International Federation of Social Workers. (2012, March 30). Statement of ethical principles. Retrieved August 26, 2014, from Joling, K. J., van Marwijk, H. W., Veldhuijzen, A. E., van der Host, H. E., Scheltens, P., Smit, F., & van Hout, H. P. (2015). The two-year incidence of depression and anxiety disorders in spousal caregivers of persons with dementia: who is at the greatest risk? The American Journal of Geriatric Psychiatry: Official Journal of the American Association for Geriatric Psychiatry, 23(3), doi: /j.jagp Kaplan, D. B., & Berkman, B. (2011). Dementia care: A global concern and social work challenge. International Social Work, 54(3), doi: /

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