Alzheimer's Disease: Taking Care of the Caregiver

I help a person with Alzheimer's disease but have never considered myself to be a “caregiver.” When does a “helper” become a “caregiver?”

Most people who provide care and support to a person with Alzheimer’s disease don’t think of themselves as caregivers. Rather, they consider themselves to be a devoted spouse, child, family member or friend helping a loved one in a time of need.

If you pause for a moment and think about all you do, you may be surprised by the depth and extent of your involvement. While the type of support varies based on factors such as capabilities of the person with Alzheimer’s disease, health of the caregiver and geographic distance, these are tasks you may take on as a caregiver:

• Assisting with daily activities such as meal preparation, bathing, dressing and grooming
• Housekeeping and laundry
• Driving to appointments and other errand running
• Scheduling healthcare and other appointments
• Shopping for groceries, clothing and supplies
• Managing medications and daily dosage schedule
• Handling finances, insurance and legal matters
• Planning social and recreational activities
• Learning about Alzheimer’s disease symptoms, treatments and care needs to improve your skills

What can I do to take better care of myself as I continue to care for my loved one with Alzheimer’s disease?

Many individuals with Alzheimer’s disease need assistance on a daily basis. If you offer care and support to someone with dementia, your life is also affected. Being a caregiver can impact your physical health and emotional well-being as well as raise legal and financial concerns.

As a caregiver – and similar to the well-known pre-flight instruction -- “you must put on your oxygen mask first before assisting others.” You must take care of yourself first in order to be an effective caregiver. So what should you do? Below are some tips for managing some of the most common challenges caregivers face.

Caregiver challenge: Caregiving responsibilities

Tips for coping include:

• Set realistic and attainable goals for yourself and your loved one. Identify smaller steps to reach each goal. Create a plan to outline first steps to get started.
• Learn about Alzheimer’s disease, ways to address symptoms and planning for care over the course of the illness.
• Build your support team. Ask for support from family, friends, doctors, faith-based organizations, social service agencies and others to help with caregiving tasks and issues as the disease progresses. The mightier your team, the stronger you are.

Caregiver challenge: Physical health

Tips for coping include:

• Take care of your own healthcare needs.
• Focus on ways to maintain a healthy lifestyle while caregiving.
• Keep regularly scheduled medical appointments and seek help for new health concerns.

Caregiver challenge: Emotional health

Tips for coping include:

• Identify ways to reduce stress. For some people, exercise, yoga, meditation, mindfulness or journaling are helpful. Experiment to find what works for you.
• Seek out a social worker, therapist or mental health professional to address depression, anxiety and stress.
• Participate in programs designed specifically to support caregivers caring for loved ones with Alzheimer’s disease.

Caregiver challenge: Well being

Tips for coping include:

• Take breaks (also called respite) from the responsibilities of caregiving; even a short break can be helpful. Respite care can be provided by family, friends, volunteers, in-home agencies, day care or skilled care facilities. Some communities have programs that help toward the cost for respite care.
• Prioritize your wellbeing. Focus on healthy eating, regular exercise and adequate sleep.
• Talk with family, friends, clergy and others on your support team about your experiences.
• Join a support group to exchange ideas with others in similar circumstances and find options to solve challenging situations.
• Take steps to avoid isolation. Strength, solace and creativity are positive outcomes of interacting with others.

Caregiver challenge: Legal/financial

Tips for coping include:

• Talk with your loved one about legal and financial issues early in the disease to understand their wishes for care over the course of the illness.
• Complete or update advance directives early in the disease process while the individual has the capacity to make these decisions.
• If employed, consider the impact of caregiving responsibilities on your job. You may wish to talk with your boss or Human Resource Department about options for flexibility in the workplace.

Being a caregiver is both rewarding and challenging. Caring for a loved one with Alzheimer’s disease can bring families closer together, increase adaptability and coping skills, and offer the chance to give back to someone special. Effective caregivers are knowledgeable about the disease and its symptoms, strive to take care of themselves and accept help from all available resources to ensure their own well-being during their caregiving journey.

• Department of Health and Human Services. Eldercare Locator. Connects you to services for older adults.
• Alzheimer’s Association. Support Groups.
• Family Caregiver Alliance. Caregiver Issue and Strategies.
• Administration for Community Living. National Family Caregiver Support Program.
• National Academy of Elder Law Attorneys.
• National Institute on Aging. Legal and Financial Planning for People with Alzheimer’s.
• National Council on Aging. BenefitsCheckUp.
• Aging Care. 10 Government Resources Every Caregiver Should Know About.
• AARP. Need Help Paying for Your Loved One’s Caregiver?