Emotional Stress And Strain On Families Affected By Dementia

While the effects of dementia on individuals living with Alzheimer’s disease and other forms of dementia are well-documented, the emotional and financial impact on family caregivers and loved ones of people with dementia is still being examined. However, current research shows a challenging reality for dementia caregivers and patients. Examining the emotional stress and strain on families affected by dementia, as well as coping strategies and resources, may be helpful for caregivers and those with dementia alike. 

The effects of Alzheimer’s disease and vascular dementia

Dementia is a neurological condition brought on by an underlying disease. The leading cause of dementia is Alzheimer’s disease, followed by vascular dementia, which affects the blood vessels in the brain. Though cognitive impairment is the symptom most associated with dementia, behavioral and psychological symptoms tend to manifest as well. Common symptoms of dementia include the following:

• Memory loss: Difficulty remembering recent events or information.
• Confusion: Feeling disoriented or having trouble understanding what's happening around them.
• Impaired judgment: Difficulty making decisions or solving problems.
• Personality changes: Mood swings, irritability, or changes in behavior.
• Difficulty communicating: Struggling to find the right words or following conversations.
• Disorientation: Getting lost in familiar places or losing track of time.
• Difficulty with daily tasks: Struggling to complete tasks that were once routine, such as cooking or managing finances.
• Withdrawal: Becoming more socially withdrawn or losing interest in activities one once enjoyed.

Additional statistics show over 11 million Americans are currently providing unpaid care for people with dementia. As cases of dementia rise, its far-reaching effects on families and caregivers become increasingly apparent. 

The financial impact of dementia

Dementia not only affects the mind but also takes a significant toll on the finances of individuals and their families. According to a study published in JAMA Internal Medicine by researchers from the University of Michigan, the financial impact of dementia becomes evident within the first few years of diagnosis. 

People diagnosed with dementia experienced more than double out-of-pocket spending for healthcare, which averaged around $8,000 annually, compared to their peers without dementia. Additionally, their net worth declined drastically by over 60%, from an average of $79,000 to $30,500 within the same timeframe. 

The same study highlighted an increased demand for caregiving among family members of those with dementia. By the end of the second year after symptoms onset, individuals with dementia required three times more hours of care from family and friends. 

Additionally, children, spouses, and other unpaid caregivers of people with dementia often make significant sacrifices, including quitting jobs or reducing work hours to provide care. This loss of income may affect their current financial situation and their long-term financial security, as they miss out on retirement savings, employer matches for retirement plans, and contributions to Social Security. 

Health insurance or Medicare options may not fully cover the costs of dementia caregiving. According to the Alzheimer's Association, 70% of the overall cost of caring for someone with dementia is taken on by families, either through out-of-pocket health and long-term care expenses or from the value of unpaid care. 

The stress and strain on families affected by dementia

Family caregiving often takes a toll on one’s mental health. Based on facts and figures published by the Alzheimer's Association, 83% of the help provided to older adults in the U.S. comes from a family member or other unpaid, informal caregivers, with about 30% of caregivers being over the age of 65 themselves. The same report explains, “Approximately one-quarter of dementia caregivers are ‘sandwich generation’ caregivers — meaning that they care not only for an aging parent but also for at least one child.”

The demands of dementia caregiving often create extreme emotional strain, with studies indicating higher levels of stress, depression, and anxiety symptoms in people caring for a family member or loved one with dementia. Additionally, research shows dementia caregivers experience adverse physical health outcomes, including higher levels of stress hormones and compromised immune response. These risk factors often increase the likelihood of developing depression, anxiety, or chronic illness.

Along with the stress of caregiving, the emotional impact of watching a loved one's health and memory decline may be profound. However, studies show that family members are often motivated to provide for their care recipient for several reasons, such as love or reciprocity, spiritual fulfillment, duty, guilt, or social pressures.

Coping with caregiver burden

Prioritizing caregiver health might seem like an added burden to a long list of tasks. However, self-care can significantly reduce stress, prevent illness, and enhance overall well-being. To start taking better care of themselves and managing stress, caregivers can:

• Accept help from friends and family to take breaks: Use this time for activities like walking, going to the gym, playing with children, napping, or showering. 
• Exercise at home while the person they are caring for is resting: Activities like yoga stretches or using a stationary bike may be effective.
• Try out a hobby: Engage in hobbies that bring joy, such as drawing, reading, painting, or knitting.
• Eat nutritious foods: Eat nutritious foods to maintain energy levels and strengthen the body and mind. Contact a nutritionist for an eating plan that suits your unique body and lifestyle. 

Research has also shown that joining a dementia support group can significantly improve mental health and quality of life for individuals with dementia and their caregivers. These groups often offer a sense of community, shared experiences, practical advice, and resources. Checking out organizations like the World Health Organization (WHO), CDC, and Alzheimer’s Association may also be beneficial for learning more about dementia and health. 

The positive impact of caregiving

While there is a heavy focus on the negative aspects of caregiving for those with dementia, studies show that there are also positive aspects. Caregivers who see the benefits of their role tend to feel less burdened, have better health and relationships, and receive more social support. Between 55% and 90% of caregivers report positive experiences. These include enjoying time together, sharing activities, feeling a strong bond, experiencing personal and spiritual growth, having more faith, and experiencing a sense of accomplishment.

Navigate coping skills for caregivers with professional support

Talk to a compassionate counselor

Mental health support options 

Caregivers and those with early dementia often experience mental health challenges. Therapy can be a valuable tool to shift one’s attitude about caregiving and self-care. However, in-person therapy may be difficult to access due to accessibility challenges or a busy schedule. In these cases, online therapy through a platform like BetterHelp may be more convenient.  

Through an online platform, individuals can connect with their providers via phone, video, or live chat sessions from home or any location with an internet connection. In addition, online therapy may work alongside a busy schedule, allowing clients to schedule sessions at a time that works for them, including outside standard business hours. 

Studies show that online therapy is effective in reducing mental burnout, a common symptom in caregivers. Internet-based therapy programs can reduce mental burnout and improve the quality of life for clients. In the study, telehealth employees who completed online counseling were over 26% more likely than the control group to report lessened burnout.