Caring for someone with dementia often feels like an endless road trip without any rest stops, says Paula Forte, PhD, author of Self-Care Strategies for Family Caregivers. She encourages caregivers to get help and take breaks to protect their physical and mental health.
Build a team
You cannot care for someone alone. Your team can include family members, neighbors, friends, hairstylists, people from faith communities, and more. They should be made aware of the situation, even if only through brief, simple conversations, says Dr. Forte. “As needs change, so will the team, with members shifting based on their availability and energy levels. For example, you may need someone to take your loved one to adult day care while you attend a medical appointment,” she says. “Caregivers must anticipate these evolving needs and ensure that a supportive network is always available.”
Be specific
Articulate what you need, says Dr. Forte. “Instead of saying, ‘Can you come over to help me with my mom?’ you might want to say, ‘Can you sit with my mother from noon until 3 p.m. on Monday while I go to the dentist and the grocery store?’” This helps others understand exactly what is required, and they may be more likely to say yes, says Dr. Forte. “Also, remember that your support team includes both volunteers and paid professionals, and maintaining communication and appreciation within this team is vital for long-term care.”
Maintain social connections
Having a social life isn't easy when caring for someone with dementia, but it's important not to become isolated. Arrange get-togethers where you can truly be yourself, whether it's walking with a group, seeing friends at the pickleball court, or socializing at your place of worship. “By fostering and nurturing these relationships, you create a network that contributes positively to your well-being,” says Dr. Forte.
Read More: How Loneliness Affects Health
Protect your own health
Several studies have shown that a significant number of caregivers of people with dementia die before their loved ones. One study, published in Alzheimer's & Dementia in 2018, found that 18 percent of spousal caregivers of people with Alzheimer's disease died before their partners. “When you ignore yourself, your health will suffer, and that puts you and your loved one in jeopardy because your loved one needs you,” says Dr. Forte. She recommends getting help from others or finding adult day care programs to ease the burden and free up time for exercise and eating healthy snacks and meals.
Access the pros
In July 2024, the Centers for Medicare & Medicaid Services (CMS) launched the Guiding an Improved Dementia Experience (GUIDE) model to help people with dementia and their unpaid caregivers. GUIDE is designed to improve the quality of life for people with dementia and help them remain in their homes and communities. It also aims to reduce the burden on caregivers. People on traditional Medicare will be eligible for a “comprehensive package of care coordination and management, caregiver education and support, and respite services,” according to the CMS. Participants will be assigned to a care navigator, who will help them access GUIDE services as well as non-GUIDE services such as meals and transportation through community organizations. For more information and to determine eligibility, visit cms.gov.
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