The Impact of Dementia on Caregivers and Family Members: Dementia Care at Home

Intro

For people with dementia, family caregivers can be a godsend, providing a sense of familiarity and security in the face of dementia. Dementia and Alzheimer’s disease come with various manifestations, most markedly confusion and memory loss. Among the untold symptoms of dementia are those experienced by those who selflessly care for them.

The problems that family caregivers face are immense enough that the Centers for Disease Control warns they are at risk for depression and anxiety and tend to face greater amounts of risk than caregivers of people without dementia. Sleepless nights spent wrangling a wanderer is just one of the countless ways caregivers are impacted by their job. Read on to learn about the seven common issues that affect family caregivers of someone with dementia.

1: Caregivers of Family Members with Dementia Experience Significant Daily Burdens

The list of things a person with dementia needs help with daily is vast and varies from person to person. Among the possible items, if you’re a family caregiver of a person with dementia, you will spend a significant amount of time each day assisting with:

• Dispensing the correct type and amount of medications at the right times
• Meals, as often people with dementia have safety issues in the kitchen
• Scheduling doctor’s appointments and enrichment activities
• Monitoring your family member with dementia to prevent wandering
• Hygiene and toileting as needed

Behavioral issues experienced in those with dementia can be overwhelming, especially when the behaviors are violent or sexual. In these cases, caregivers have the extra burden of protecting themselves, others, and the family member they are caring for. This strain can cause rifts in the relationship between a caregiver and their family member as well, putting both parties at further risk of depression. In other words, this situation can quickly escalate, cause mental hardship on the caregiver, and impact the family.

People with dementia often manifest communication issues, further compounding the stress of being a family caregiver. While it might be helpful to try to empathize with our loved ones, who are suddenly stricken with the inability to speak, the harsh reality is that family caregivers face much higher stress levels when we cannot effectively communicate with our family members with dementia.

On top of the typical daily impact, the COVID-19 pandemic has exacerbated the stresses of caregiving for family members with dementia. One study on family caregivers from Italy and Switzerland reports a marked increase in moderate depression and mild anxiety during the first wave of the pandemic. Of the study participants, 72% of caregivers also reported loneliness.

2: The Financial Impact on Caregivers of Family Members with Dementia

Family caregivers of people with dementia face a heavy financial burden, often taking on financial and medical responsibility. The average family caregiver is still employed by their 9-5, as caregiving does not usually cover the cost of living and other expenses. Medicare, Social Security, and other healthcare programs might pay for medical supplies and prescriptions, but many caregiving supplies aren’t covered. For example, incontinence supplies are often paid for out-of-pocket, as well as mobility devices and hearing aids. This can dramatically increase monthly household expenses for the family caregiver, with little means of finding alternative income to make up for the new bills. Family caregivers and other household members often have to take on secondary jobs, or side gigs such as delivery driving, to bridge the financial gap. It's also common for people to start lowering expenses by cutting spending on their own daily habits, such as the daily drive-thru mocha, to meet those needs.

Luckily, there are federal government programs that may be able to help by paying family caregivers for caring for family members with dementia. State and federal programs, like Medicaid and those from the VA, can help you pay for dementia care at home. With these programs, family members can get paid for the care of and services provided to their loved ones. A guide for family caregivers of people with dementia is also available from the AARP, which offers advice and an Alzheimer’s disease and dementia hotline for caregivers and families.

3: Caregivers Have Few Emotional Supports

A common complaint of the caregiver of a family member with dementia is isolation. A recent longitudinal study on aging showed that adult caregivers of parents and spousal caregivers tend to face higher amounts of loneliness as time goes on. Men tend to be at a greater risk of isolation than female family caregivers of family members with dementia.

The cause of this is generally due to a simple lack of time, with outside relationships becoming less of a priority. There is also a correlation regarding the severity of dementia. If your loved one needs more help during the day, sundowns, and wanders at night, it makes sense that you’ll be too exhausted to spend time with friends and family. Relationship strains are quite common when you’re a family caregiver. To alleviate this issue, search for group counseling for caregivers of family members with dementia.

4: The Mental Health Impacts of Being a Family Caregiver for a Person with Dementia

The emotional wellness of a caregiver for a family member with dementia can be highly compromised through every stage of caregiving, from initial diagnosis to end-of-life care. The daily burden of assisting another person with their self-care, increasing health needs, and journey through their end-of-life process can be harrowing, to say the least. Caregivers also typically have the further emotional strain of ensuring that their loved one never feels like they are actually being a burden. This combination on top of one's everyday daily stresses before caregiving can be a heavy weight to bear for anyone.

Don’t underestimate the impact of formal support on family quality of life for caregivers of persons with dementia. If you are struggling with isolation due to your long hours as a family caregiver, don’t worry, there is help for you. Check out places like the Alzheimer’s Association, Lewy Body Dementia Association, and the American Parkinson's Disease Association offer support groups in both virtual and community settings. If you’re interested in a social-media style platform, Dementia Mentors and Memory People offer access to a community of people with dementia as well as their caregivers and loved ones. You can also reach out to your loved ones’ doctor team for referrals, or contact your local senior center or social services center.

5: Caregivers May Be at a Higher Risk of Developing Physical Health Issues

Due to the pervasive high levels of stress you face, health conditions such as anxiety, sleeplessness, headaches, and high blood pressure can creep up on family caregivers. These negative health implications, including heart disease and other chronic diseases, tend to ramp up as family members with dementia experience worse symptoms. Coupled with the need to provide more intensive care for your loved one, this could lead to a disastrous snowball effect on your health.

However, the idea that being a caregiver causes a risk of physical health issues is controversial. A recent study from Johns Hopkins University shows that the physical impact of dementia on a caregiver’s health is much less than previously believed. It’s also important to note that the psychological effect of providing a substantial social benefit to a loved one has enough of a positive impact on caregivers that it can outweigh the negative consequences of the job.

Regardless of the mixed study results, there is no denying that taking on a burden of stress can lead to new or worsening health conditions. It’s critical to contact your healthcare provider team and seek respite resources as your loved one declines. Not only do they benefit from extra social interaction, but you’ll also spare yourself a shorter lifespan.

6: Caregivers Often Neglect Self Care and Experience a Lower Quality of Life

On top of the isolation that tends to haunt family caregivers, they also often face a lower quality of life. This is ironic, given their duties as family caregivers focus specifically on ensuring the quality of life for their family members with dementia. Due to the expanded workload someone faces when the title of “caregiver” is added to their resume, many family caregivers of people with dementia simply run out of time and energy to fulfill the self-care tasks they used to.

Finding time or motivation to do simple self-care chores can be challenging, especially as you begin to or continue to suffer the effects of depression. There are many simple pleasures in life that you can try to make yourself feel energized if you’re up for it:

• Do a crossword— the benefits of word puzzles include reduced anxiety, improved brain health and cognitive function, and a vocabulary boost.
• Garden or simply walk around outside, to give yourself a boost of vitamin D and a brain break. Touching dirt may cause a release of serotonin, giving you all the more reason to plant something that will make you smile.
• Call a friend, especially if you haven’t had time to recently!

7: Constantly Changing Needs Lead to More Stress for Family Caregivers of People with Dementia

Alzheimer’s disease follows a standard progression pattern, slowly escalating and causing a greater need for help with daily activities. It can take months or years for shifts to happen, but symptoms and other factors rarely remain stable for long in moderate and late-stage dementia. As a result, the need to learn new caregiving techniques and tactics can lead to even more stress on the family caregiver.

This stress is compounded by the emotional toll of your loved one declining. It can seem like an overwhelming burden to deal with, leading to the previously mentioned effects on the health of family caregivers for persons with dementia. However, taking a multi-pronged approach to the problem can help resolve some of your stress. In addition to community and family-based therapy for dementia caregivers, you can use free training for family caregivers. With training for caregivers of people with dementia, you can maintain your knowledge set and adaptability in the face of escalating symptoms.

Dementia training for family caregivers can be found through local access points such as community centers, your social services office, or your healthcare team. You can also go online to take advantage of the Alzheimer’s Association or the Dementia Society of America’s free online training for family caregivers of people with dementia.

Find Help with Online Support for Caregivers of Family Members with Dementia

If your loved one has Alzheimer’s disease or another form of dementia and you’re looking for the next steps, reach out to Olera Senior Care Experts. We can guide you toward the solutions your family needs with trusted advice and our free caregiver relief network. The help you need is just a click away.

Author Bio

Dr. Logan DuBose is a MD and co-founder of Olera.care. He writes about dementia, Alzheimer's, and other age-related conditions. He is a Texas A&M MD/MBA alum. Olera specializes in merging clinical practice with innovative solutions for the aging population.