Family caregivers of older adults undergo fairly predictable stages in their caregiving careers. Each stage brings different challenges and requires different kinds of help for both the care receiver and family caregiver.
Stage 1: The beginning
The initial stage of a major illness represents a significant life transition for both the infirm elder and family caregiver, often requiring considerable
adjustments in life goals, relationships, daily activities, and routines. Family caregivers may lack knowledge of the illness, impeding future planning.
What is needed:
- Information on the illness: possible causes, treatment options, expected trajectory
- Emotional support: counseling services, support groups, peer counseling programs. Peer caregivers can share solutions to everyday issues and provide encouragement rooted in empathy.
- Legal and financial planning: durable powers of attorney for asset management and healthcare decision-making; advance directives and wills; financial arrangements anticipating increased medical costs
Stage 2: Being a caregiver
This stage encompasses most of the caregiving experience and includes provision of home care and possible institutional placement.
What is needed:
- Continued education on the illness or condition and its expected trajectory
- Formal training: classes in direct-care skills (e.g., safely transferring or bathing)
- Home assessments and modifications for safety; guidance in use of relevant assistive devices
- Coaching in behavior management techniques to deal with disruptive behaviors.
- Guidance on preserving self-identity and quality of life for persons with dementia; training on effective communication techniques
- Instruction in both time and stress management; help in setting limits, developing realistic standards, prioritizing goals, avoiding burnout
- Counseling to deal with changing family dynamics, disagreements regarding management of the illness, and conflicts over division of caregiving labor and costs
- Information on available community resources and payment sources and how to access them
- In-home services to help with personal care (e.g., bathing, dressing, grooming); homemaking services (e.g., cleaning, laundry, shopping); home-delivered meals
- Guidance in working effectively with home care aides
- Exercise or rehabilitation programs for both care receiver and caregiver
- Respite care, e.g., adult day care, extended overnight respite programs
Stage 3: Completion of caregiving
During the later stages of an illness, caregivers frequently drop social activities and neglect friendships as they attempt to address the ever-growing needs of their family member. When the elder dies, the caregiver often feels socially isolated.
What is needed:
- Emotional support to deal with bereavement and loss
- Help in coming to terms with the end of caregiving, an integral part of self-identity for many
- Exploring caregiving in other forms, e.g.,
volunteering - Encouragement to re-engage and/or develop new activities to restore balance to a life previously structured by the caregiver role
CENTER ON AGING — University of Hawai‘i at Mānoa, 2430 Campus Road, Gartley Hall, 201B, Honolulu HI 96822 | 808-956-6124 | map3@hawaii.edu | www.hawaii.edu/aging/
