Emotional Care for the Caregiver

Caregiver Health

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  Stress of family caregiving for persons with dementia has been shown to impact a person’s immune system for up to three years after their caregiving ends thus increasing their chances of developing a chronic illness themselves. (“Chronic stress and age-related increases in the proinflammatory cytokine IL-6.” National Academy of Sciences, June 30, ‘03)

• 40% to 70% of family caregivers have clinically significant symptoms of depression with approximately a quarter to half of these caregivers meeting the diagnostic criteria for major depression. (Zarit, S. 2006. Assessment of Family Caregivers: A Research Perspective)
• 74% of caregivers of people with Alzheimer’s disease and other dementias reported that they were “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver. (Alzheimer’s Association Facts and Figures 2014)
• Dementia caregivers were more likely than non-caregivers to report that their health was fair or poor. (195-Alzheimer’s Association Facts and Figures 2014)
• A 2003 study found that over one in four (26%) of female caregivers reported fair to poor health compared to 12% of women generally. (Australian Bureau of Statistics (2004) Disability, Aging and Carers Australia: Summary of Findings)

Self-Assessment Questionnaire

This Self-Assessment Questionnaire will help you analyzing your own behavior and health risks and, with your physician’s help, you can make decisions that will benefit you and your care recipient. You can take this Caregiver Health Self-assessment Questionnaire to your physician and it will enable your physician to identify and provide preventive care and services.

• Caregiver Health Self-Assessment Questionnaire – English
• Caregiver Health Self-Assessment Questionnaire – Spanish

Resources

• Family Caregiver Alliance
• Share the Care – grassroots organization dedicated to preventing “caregiver burnout by promoting and educating people about the benefits of group caregiving using the SHARE THE CARE™ model.”
• Inside Alzheimer’s – How to Hear and Honor Connections with a Person who has Dementia
  For families or professionals wanting to know more about making a meaningful connection with the person with Alzheimer’s. The author covers six basic principles on how people connect with one another: by intention, free from judgment, love, openness to receive love, silence, and thankfulness. Internalizing the principles can help in all stages of the disease.
• Caregiver Newsletter
  A weekly newsletter containing guest columns and feature articles with information in manageable pieces for busy caregivers.
• Caregiver Assistance News
  A 4-page monthly newsletter on topics of interest to direct-care workers for building caregiving skills. Contains illustrations and self-care tips. The information can be used for self-training through a quiz insert with each issue.
• The Caregiver’s Bill of Rights

Complex Grief

• Alzheimer’s Society Factsheet – On grief, loss, and bereavement for caregivers, friends, and relatives of people with dementia. It looks at some of the feelings that people close to someone with dementia might experience and suggests some ways to cope.
• Caregiving, Bereavement, and Complicated Grief – This article starts with a brief summary of the general literature on caregiving and bereavement. It then defines complicated grief and discusses why some caregivers may struggle with the death of their loved one. Finally, it offers practical suggestions for what professionals can do to help caregivers both before and after the death has occurred.
• Ambiguous Loss & Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief by Pauline Boss
• Living With Grief: Alzheimer’s Disease; Living With Grief When Illness Is Prolonged; & Disenfranchised Grief: New Directions, Challenges, and Strategies for Practice by Kenneth J. Doka
• The Experience of Alzheimer’s Disease: Life Through a Tangled Veil by Steven R. Sabat

Faith-based/Spiritual Caregiving

• Center for Spirituality and Aging
  Provides education and advocacy about spirituality and ethics as they are experienced in the aging process within both faith and long-term care communities.
• Caregiving: the Spiritual Journey of Love, Loss and Renewal
  Contains a blend of powerful real-life stories, medical and financial information, and discussion on topics such as depression, stress, housing, home care, and end-of-life. The author’s personal experience with caregiving and faith lays the groundwork for this book of spiritual and practical insight.
• A Guide to the Spiritual Dimension of Care For People with Alzheimer’s Disease and Related Dementia: More than Body, Brain, and Breath
  The guide explores the physical and spiritual well-being, dignity and freedom of choice of the person, and how these can be fostered. It examines the volunteer’s own sense of empathy, understanding and support of the person and also presents practical advice on memory cueing and leading worship for those with dementia.
• Spiritual Care for Persons with Dementia
  Explores spirituality in those with dementia to enrich our understanding of the neurological and psychological aspects of hope, prayer, and the power of belief.
• Broken Fragments: Jewish Experiences of Alzheimer’s Disease through Diagnosis, Adaptation, and Moving On
  Author Douglas J. Kohn weaves into each chapter’s narrative rich Jewish texts with essays and touching personal stories by physicians, Jewish clergy, social workers, and family members of people with Alzheimer s disease. Broken Fragments offers the comfort and the wisdom of our ancient tradition while providing insight, meaning, and encouragement for the Alzheimer’s caregiver of today.
• The Christian Caregiver Blog