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If you care for an aging relative with dementia, be aware of the physical and emotional tolls you face. Remember to monitor your own health in addition to your loved one’s.

Learn how caring for someone with dementia differs from non-dementia caregiving, six common health consequences of family caregiving, and resources to help safeguard your well-being.

Only 26% of family caregivers help adults with elderly dementia, making them a minority even within the caregiving community. However, significant research on the demographic points to specific challenges, including level of intensity and length of care:

• Dementia caregivers are more likely to provide “high-intensity care,” according to the level of care index, a measure medical providers use to rate how much care a recipient needs. This means people who care for loved ones with dementia offer assistance with more activities of daily living (ADLs) and spend more time each day on caregiving than non-dementia caregivers.
• Dementia caregivers also report higher amounts of strain, mental and physical health problems, and caregiver burnout, according to a study of 1,500 family caregivers in The Gerontologist.
• More than half of dementia caregivers provide care for four years or more, significantly longer than family caregivers for people with other age-related diseases.
• People with elderly dementia typically require more supervision, are less likely to express gratitude for the help they receive (due to inability), and are more likely to be depressed.

Dementia caregivers report higher levels of stress, more depression and anxiety symptoms, and lower levels of subjective well-being than non-caregivers, according to an Alzheimer’s caregivers study by researchers at the University College of London. Caregivers who feel unprepared or trapped in their role experience more significant mental health effects than those who chose or expected to provide care.

1. Caregiver stress and anxiety

Poor health and behavioral problems in elderly loved ones directly correlate to heightened caregiver stress levels. As an aging relative progresses through the stages of dementia, caregiving may become more emotionally difficult due to changes in personality and demeanor.

Dementia behaviors like wandering, aggression, inappropriate actions, and sundown syndrome can make family members feel like they’re caring for a stranger. Emotional manipulation and verbal abuse from loved ones — potential late-stage signs of dementia — can be crushing to family caregivers.

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2. Depression

Unpaid family caregiving for 20 hours or more a week results in increased depression and psychological distress, impaired self-care, and worse self-reported health, according to 2018 research conducted by Maastricht University in the Netherlands. Caregiver depression increases as the elderly relative’s level of function declines. Because of this, dementia caregivers have higher instances of depression than non-dementia caregivers. The National Alliance of Caregiving estimates 30% to 40% of dementia caregivers suffer from depression and emotional distress.

3. Loneliness

Full-time caregiving can be an isolating experience. Especially for dementia caregivers who work from home or don’t have a traditional career, peer interaction may be limited to occasional visits and phone calls. Dementia caregivers may avoid taking their aging loved ones on errands or to social events to reduce the likelihood of wandering or inappropriate behavior in public. Over time, this isolated lifestyle can increase the likelihood of depression and other health concerns.

There are fewer studies examining physical health risks in those caring for a loved one with dementia. However, in general, nearly one in four caregivers feel that their responsibilities have made their physical health worse. That number surges for caregivers who report loneliness — nearly half of lonely caregivers feel their health has been negatively affected. Chronic conditions, persistent caregiver stress, and disregard for personal health all contribute to the physical impact of dementia caregiving.

4. Lack of self-care

Caregivers often become so focused on helping elderly loved ones with dementia that they neglect preventive health behaviors for themselves. Poor diet and exercise due to lack of time and energy can lead to long-term health consequences. The financial burden of caregiving can force family members to make choices between their aging relatives and themselves, and nearly three quarters of caregivers report making it to the doctor less often than they should. Since dementia caregiving often spans longer periods of time than other types of caregiving, these family members may go years without prioritizing their health, leading to complications later on.

5. Increased mortality

Chronic conditions and comorbidities coupled with caregiver stress can be especially dangerous for older caregivers, like spouses. Seniors with their own history of chronic illness who have caregiving-related stress have a 63% higher mortality rate than their non-caregiving peers, according to the American Psychological Association.

Dementia caregiving increases mortality risks for healthy caregivers as well. Despite a significantly lower risk of mortality, 18% of healthy spouse caregivers die before their partner with dementia, according to data culled from a 17-year Health and Retirement Study.

6. Chronic stress

Chronic stress is a persistent version of the body’s flight or fight response, during which a person feels constantly alert and in danger. It leads to physical and psychological strain over long periods of time without predictability or control, like a loved one’s gradual cognitive decline.

The chronic stress from caregiving often bleeds into other aspects of life, like family relationships and work, according to research published by the American Journal of Nursing. Chronic stress causes an endocrine system response in which corticosteroids, or stress hormones, are released. Long-term exposure to these hormones can disturb the immune, digestive, cardiovascular, sleep, and reproductive systems.

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Help for dementia caregivers

In order to care for your loved one, you need to care for yourself. If you’re struggling with dementia care or experiencing caregiver burnout, check out these resources:

• Learn about the benefits of asking for help with this list of respite care resources
• See if it may be time to explore memory care by answering these 12 questions.
• Get tips on how to support your loved one who wants to age in place with dementia
  
• Understand what to expect in the future with a guide to the seven stages of dementia
• Learn the benefits and downsides of moving a loved one with dementia to your home
• Connect with other dementia caregivers with these caregiver support groups

Sources:

American Psychological Association. The High Cost of Caregiving. https://www.apa.org/research/action/caregiving

Centers for Disease Control and Prevention. Caregiving for Family and Friends – A Public Health Issue. https://www.cdc.gov/aging/caregiving/caregiver-brief.html

National Alliance of Caregiving and AARP. Caregiving in the U.S. https://www.caregiving.org/wp-content/uploads/AARP1316_RPT_CaregivingintheUS_WEB.pdf

St. Louis University. Caregiver Health: Health of Caregivers of Alzheimer’s and Other Dementia Patients. https://pubmed.ncbi.nlm.nih.gov/23712718/

University of Pittsburgh. Physical and Mental Health Effects of Family Caregiving. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2791523/

University of Rochester. Issues in Dementia Caregiving: Effects on Mental and Physical Health, Intervention Strategies, and Research Needs. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3774150/