Major Health Risks for Dementia Caregivers

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. Take advantage of caregiver support groups, financial assistance, and more to help alleviate all possible burdens.

Learn about how caring for someone with dementia differs from non-dementia caregiving, the impact of dementia on caregivers and family members, and resources to help safeguard your well-being.

About 48% of caregivers who help older adults assist someone diagnosed with Alzheimer’s or another dementia.^[01] While being the caregiver for an Alzheimer’s or dementia patient has positive impacts, significant research on unique dementia behaviors causes specific challenges to caregivers:

• Providing high-intensity care. Dementia caregivers are more likely to provide “high-intensity care” and handle behavioral problems.^[02] 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.
• Mental and physical strain. Dementia caregivers report higher amounts of strain, mental and physical health problems, and caregiver burnout. They also report social isolation and financial hardships as a result of caregiving for a loved one with dementia.^[02]
• Longer term caregiving. The median timeframe for dementia caregiving is approximately five years, significantly longer than family caregivers for people with other age-related diseases.^[03,04]
• Increased supervision. 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.
• Health risks for the care recipient. The psychological well-being of a dementia caregiver can also affect their care recipient. This often stems from the negative aspects of caregiving which in turn increases the chances of depression and anxiety in their care recipient.^[05]

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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.^[06] 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. Dementia caregiver stress and anxiety

Poor health and behavioral problems in elderly loved ones directly correlate to heightened caregiver stress levels.^[02] 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 (like cursing or hitting), 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 for dementia.

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.^[07] 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 CDC estimates that about 60% of dementia caregivers suffer from high rates of emotional distress and approximately 40% report symptoms of depression.^[08]

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 out in public due to the fear of incidents like wandering or inappropriate behavior resulting in uncomfortable situations. Over time, this isolated lifestyle can increase the likelihood of depression and other health concerns.

4. Strain on marriage

The impact of dementia on a spouse who cares for their loved one is unique. Spousal dementia caregiving results in a restricted social life, less personal time, and emotional distress.^[08] It can be challenging to have your life partner forget cherished memories and show aggression towards you. Additionally, a study has found an increased risk of dementia for spouses of persons with dementia.^[09]

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There are fewer studies examining the physical health risks in those caregiving for dementia family members. However, in general, nearly one in three dementia caregivers feel that their responsibilities have made their health worse.^[10] 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.

1. 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 for dementia patients 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.

2. Increased mortality rate

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 a study researching the link between mortality and caregiving.^[11]

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.^[12]

3. 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 dementia caregiving often bleeds into other aspects of life, like family relationships and work, according to research published by the American Journal of Nursing.^[13] 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.

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

• Ask for help. If you care for a loved one, ask a willing family member if they can step in for a bit as you take a break. Or, find respite care for them as you give yourself some time to relax.
• Create a caregiving contract. You can notarize a family caregiver contract with your loved one’s family members to help ensure everyone meets their expectations, fulfills their responsibilities, and is treated fairly.
• Find what works for you and your loved one. It may be best for your loved one to age in place, or you’d rather they move into your home. Weigh the pros and cons then decide what benefits the both of you.
• Explore memory care options. If your loved one’s needs are increasing and it’s becoming difficult to care for them at home, you may want to consider moving them to a memory care facility. Learn how to identify some signs to help you decide.
• Join a support group. It can be challenging to deal with dementia caregiving challenges alone. Joining an online dementia-care forum or in-person caregiver support group can help you feel less alone, because they allow you to share experiences, receive advice, and encourage one another.
• Educate yourself on dementia. Learning about the stages of dementia can help you prepare for what’s to come and help you manage common behaviors.

Read more:How Much Does In-Home Dementia Care Cost? Surprising Facts and Resources