Dementia caregivers often sacrifice their own health while caring for loved ones, and self-care is essential to preventing burnout.
Tori Cohen
Executive Director, Long Island Alzheimer’s and Dementia Center
Caring for the caregiver involves prioritizing physical, emotional, and mental health to prevent burning out, often through respite care, support groups, and setting boundaries. When working with families that have loved ones with dementia, the journey can be difficult, and the more empowered the families feel with resources and support, the better.
A caregiver is a family member or friend caring for a loved one with dementia. This can include spouses, adult children, grandchildren, nieces, nephews, neighbors, and siblings. About 70% of this population lives in the community. 74% live with someone, and 26% live alone. 66% of caregivers live with the diagnosed individual.
Most of the time, we hear from the family that they have a desire to keep a family member at home. The reasons are proximity to the person with dementia and the caregiver’s perceived obligation as a spouse or partner. Here are some statistics:
- Over 11 million unpaid caregivers care for those living with Alzheimer’s disease (AD) and related dementias in the United States
- Caregivers of those with AD and related dementias provide an estimated 15.3 billion hours of unpaid care a year
- 83% of help provided to older adults comes from family members, friends, and other unpaid caregivers. 48% of these caregivers care for someone with dementia
- About 65% of these caregivers are under 65 years old
- More than half of all caregivers care for their parents and their own children, a group called the “sandwich generation”
- 63% of all caregivers are women
- The total lifetime cost of care for someone with dementia is approximately $341,840
The burden on caregivers
Caregivers have so much to do just caring for their loved ones that they often set aside their own responsibilities to assist with activities of daily living, such as grooming, bathing, toileting, and feeding. Their tasks also include appointments and transportation, finances and legal affairs, medication management, behavioral symptoms, addressing family issues, and coordination of care.
With all of this responsibility, caregivers are at risk of feeling sadness, stress, anxiety, anger, guilt, and grief, along with the frustration of being a “living widow,” denial, and sleeplessness. Many caregivers also report cutting back on their own necessities (e.g., food, medical care) due to caregiver responsibilities.
What the research shows
Based on the Alzheimer’s Association “2021 Alzheimer’s Disease Facts and Figures” report:
- Many respondents did not know or had misconceptions about what expenses Medicare and Medicaid cover, leaving individuals unprepared for expenses
- On average, care contributors (someone who is a caregiver but does not reside in the home) spend an average of $5,155 a year to care for a friend/family member with dementia
- Many caregivers reported having to work fewer hours or stop working entirely to care for an individual with dementia, causing a loss of income
- 40% of caregivers report clinical levels of depression
Overall findings were that care contributors are jeopardizing their own health, as well as their own financial well-being, to support the individual with dementia.
Caring for yourself
Our team of social workers encourages caregivers to consult a professional, stay active, find time to take care of themselves, and do things that make them happy. Caregivers need to manage expectations and find the support they need. Self-care is the intentional practice of taking action to preserve or improve one’s own physical, mental, and emotional health.
A recent testimonial from one of our caregivers at the Long Island Alzheimer’s and Dementia Center states, “Having a spouse diagnosed with dementia is a tragic event. Yet, I discovered that instead of it being the end of the world, it can be the beginning of a new chapter. My advice to others faced with this event is that the sooner one ignores the inherent tragedy, identifies the tremendous resources that are available, adopts an appropriate strategy for dealing with the issue through immersive education, modifies their own behavior, and implements a problem-solving action plan, the sooner they can dramatically improve their spouse’s life and their life to one that is well-lived again.”
