Florida: Alzheimer’s and Related Disorders for Nursing Homes, Adult Day Care, and Hospice, 1 unit (336)Page 5 of 10

4. Challenges for Caregivers of Patients with ADRD

I’ve been hired to help care for a woman with mild dementia. She has five kids—they have always come to their mother to discuss their personal problems. When they visit I noticed the mom always agrees with them but when they leave she turns around and says “I can’t stand to hear all their complaints.”

She gets really agitated after they visit. Sometimes she sits and cries for the rest of the day and into the evening. I can’t snap her out of it. She didn’t use to be like this. I get so tired it almost isn’t worth it—I never get any sleep when I’m there. I finally had to cut back from 7 to 4 days—it was really difficult dealing with the family and caring for this woman.

Professional Caregiver, Ft. Lauderdale, Florida

A caregiver is someone who provides assistance to a person in need. Care can be physical, financial, or emotional. Each year, more than 11 million family members and friends provide over 18 billion hours of unpaid care to those with Alzheimer's and other dementias (Alzheimer’s Association, 2023).

Caregivers help with basic activities of daily living (ADLs) such as bathing, dressing, walking, and cooking. They also help with more complex tasks such as managing medications and taking care of the home. Caregivers can provide direct care or manage care from a distance. They can be a family member, a neighbor, a friend, or a medical professional.

The responsibilities of caregiving can be overwhelming. More than half of caregivers of people with Alzheimer's and dementia rate the emotional stress of caregiving as high or very high. Compared with caregivers of people without dementia, caregivers of those with dementia indicate substantial emotional, financial, and physical difficulties (Alzheimer’s Association, 2023).

Caregiver Challenges in Mild Dementia

In the early stage of dementia, family caregivers may not know much about dementia and may not seek help. They may be confused and frustrated when their family member “acts funny.”

In the early stages, caregiving responsibilities can usually be handled by family members. In this stage, caregivers can often handle light caregiving duties. The person with dementia may only need help with complex activities such as banking, bill paying, medical appointments, and medications.

People with mild dementia may still live alone, drive, and even have a job. They can usually handle activities of daily living such as bathing, eating, and cooking.

Caregiver Challenges in Moderate Dementia

In the moderate stage, the stress of caring for a previously independent person can take a great deal of time. It can cause anxiety, sleep disruption, anger, and depression.

In this stage, more time is needed for caregiver duties. Loss of free time, work conflicts, and family issues may seem impossible to resolve. Often the responsibility of caregiving falls mostly on one person—often a woman—leading to anger and frustration with other family members.

Caregiver Challenges in Severe Dementia

I’m exhausted. I can’t sleep because I have to watch out for my wife. She wanders around the house, takes out all kinds of stuff from the kitchen. I don’t know what she’s going to do. It’s exhausting and depressing.

Family Caregiver, Pensacola, Florida

In the later stages of dementia, when fulltime care is needed, family members face difficult decisions. Should the person with dementia move in with a family member? Should a full-time caregiver be hired? Should their loved one be admitted to a long-term care facility?

Behaviors such as agitation, irritability, obscene language, tantrums, and yelling are embarrassing, tiring, and frustrating for caregivers. Caregivers can be injured if a person throws things, strikes out, or bites. Caregivers may react out of fear and strike back or yell to stop these behaviors, creating guilt and more frustration.

In this stage, safety can become a challenge for caregivers. If finances allow, a one-on-one caregiver may be needed during the day. If finances do not allow the hiring of an outside caregiver, family caregivers become exhausted tending to a person who needs constant supervision. Jobs, hobbies, friendships, travel, and exercise fall to the side. Caregivers often neglect their own health, causing more stress.

If the person with dementia is still living at home, caregivers must provide more support. Family members may find it impossible to continue to provide care and may have to move their loved one to an assisted living or skilled nursing facility.

At the end of life, care is usually carried out by a group of people who work together to care for and comfort a person prior to death. Hospice care is available under Medicare, most state Medicaid programs, and some private insurance plans. Hospice provides care for those believed to have less than six months to live.

Advance directives such as a living will and a durable power of attorney should be on file. These legal documents allow a person to communicate wishes about end-of-life care while they are still able to make these decisions.

Caregiving Challenges During COVID

Nursing homes and other longterm care facilities were the site of major outbreaks in the early stages of the COVID-19 pandemic and residents with Alzheimer’s and other dementias were particularly affected. The pandemic has posed significant social, psychological, emotional, and physical challenges to family members and friends who provide care for people with dementia. Fatigue and burnout among dementia caregivers and their lack of access to services and supports for themselves and for the people for whom they provide care were common concerns (Alzheimer’s Association, 2023).

The inability to visit or engage with relatives caused distress as well as significant concerns about the health of family members and friends living in residential longterm care during the pandemic. Studies of end-of-life care during the pandemic indicated that dementia caregivers felt that enforced social isolation adversely influenced the death and dying experience of relatives during the pandemic (Alzheimer’s Association, 2023).