Dementia and Alzheimer’s: The Stress on Families and Women

Alzheimer’s Disease

“Alzheimer’s disease takes a stronger toll on women than men. More women than men develop the disease, and women are more likely than men to be informal caregivers for someone with Alzheimer’s disease or dementia . . . as caregiving responsibilities become more time consuming and burdensome or extend for prolonged durations, women assume an even greater share of the caregiving burden. In addition, women are less likely than men to receive outside help for caregiving . . . with the burden placed on women has many consequences, including higher emotional and physical stress, strained family relationships and lost employment opportunities.”
– 2014 Alzheimer’s Facts and Figures, Alzheimer’s Association

Living with or caring for a loved one who has Alzheimer’s or dementia is a daunting challenge for family caregivers. Families must navigate through endless information and make decisions on the type of care, family involvement and costs of daily living needs. Often times, these decisions must be made as the disease progresses.

Quick Facts

  • Alzheimer’s disease is the most common type of dementia.
  • One in nine older Americans has Alzheimer’s disease.
  • One-third of all seniors who die in a given year have been diagnosed with Alzheimer’s or another form of dementia.
  • In 2013, Americans provided 17.7 billion hours of unpaid care to people with Alzheimer’s disease and other dementias.
  • Medicare and Medicaid are expected to pay $150 billion in 2014 for health care, long-term care and hospice for people with Alzheimer’s and other dementias.
  • Women are 2.5 times more likely than men to provided “on duty” care 24 hours a day in the late stages of the disease.

 

Many families become concerned about long-term care because they are unsure about how much care will cost them, or even how to pay for care. On average, Medicare beneficiaries 65 and over with Alzheimer’s and other forms of dementia paid $9,970 out of pocket for health care and other long term care services. The highest per-person out-of-pocket expenses were for those living in nursing homes and assisted living facilities, at an average of $19,196. This is almost six times greater than the average per-person payment for a person with Alzheimer’s or other dementia living in the community.

Most Common Forms of Dementia:
Dementia is defined as a “general term for a decline in mental ability severe enough to interfere with daily life” (Source). It is an overarching term for diseases and conditions caused by damage to nerve cells in the brain. Symptoms can vary between people, but to be considered dementia, at least two of the following areas must be affected: Memory, communication and language, ability to focus and pay attention, reasoning and judgment, visual perception.

Alzheimer’s disease is not the same condition as dementia, it is actually a type of dementia that accounts for 60 to 80 percent of dementia cases, and affects about 5.2 million Americans in 2014. It is the sixth leading cause of death in the United States. In 2013, more than 15 million unpaid caregivers in the United States provided about 17.7 billion hours of unpaid care, a contribution valued at over $220.2 billion. Alzheimer’s affects people differently, but these are some symptoms seen in patients: Memory loss severe enough to impact daily life, difficulty planning or solving problems, problems completing tasks at home or work, changes in mood or personality, withdrawal from work or social activities, and new problems with words in speaking and writing (For more warning signs, go to 10 signs).

Depression is among the most common mental disorders seen in people 65 and older, but is under-recognized and undertreated. Oftentimes it occurs alongside other diseases such as Parkinson’s, stroke, and cancer. When left untreated, it can lead to a worsening of other conditions and lower a loved one’s enjoyment of life (National Institute of Health).

Hospital delirium is a common problem with hospitalized patients who are 65 and over. Around 20% of people in this age group admitted to hospitals, up to 60% of those who undergo certain surgeries, and almost 80% of those in the ICU experience this type of delirium. Delirium is not the same condition dementia, and typically appears quickly, involves changes in consciousness and attention, and disappears within a few days or weeks. Families and medical staff should be aware of the problem as it can hinder recovery and is frightening for the patient. For more information on hospital delirium, visit Harvard Health Publications.

Parkinson’s disease dementia is another form of dementia in which there are problems with movement (rigidity, tremors, and gait changes) due to problems in the “substantia nigra” of the brain. As Parkinson’s progresses, it can often result in dementia due to the accumulation of Lewy bodies in the cortex or clumps and tangles, like in Alzheimer’s disease.

There are a few ways to get an early diagnosis, even before symptoms begin. A doctor will look at family history and other risk factors, and may administer one of a few tests. These can be brain scans, neuropsychological tests, and other lab tests. These help the person with Alzheimer’s or dementia take charge of their future. They can begin to make lifestyle changes to help protect their body as much as possible. Exercise has been shown to reduce brain shrinkage in people with a gene that predisposes them to Alzheimer’s (NY Times). They should also be eating healthy foods that can help keep their body functioning longer.

Family Caregiving
The most important way to help a loved one with these conditions is to get an early diagnosis. This is the best start for families as a lot of stress can be alleviated with early planning. This allows the person living with the disease to take a more active role in planning and takes the guesswork out for family members.

About 80% of Alzheimer’s patients are cared for by an unpaid family member or friend, which puts an enormous amount of strain on that person. They often do not have the resources necessary to the job, but do not know where or how to ask for help. When asked if they found caregiving physically stressful, 47% of women and 24% of men responded that they found their role as a caregiver very stressful. When asked if they found their role to be emotionally stressful, 62% of women and 52% of men responded that they found their role very stressful. 37% of caregivers agreed with the statement, “I had no choice in becoming a caregiver.”

Caregiving Tips

  • Find a support group to share experiences and talk to others (alz.org)
  • Ask friends and family for support. Set up a system where responsibilities are divided and the primary caregiver gets time off. Build a care team that is trustworthy and knowledgeable.
  • Find out how Medicare, Medicaid, and insurance can help finance a loved one’s care. Make note of what is and is not covered (alz.org)
  • Exercise to keep your own body healthy. This does not have to be a solo activity-going for a walk or hike with a friend or even doing light exercise with a patient who is able to participate can be a bonding activity and boost mood.
  • Educate yourself on the progression of the disease, and plan ahead. When a loved one needs around the clock care or more than the primary caregiver can handle, it may be time to seek out an assisted living facility, nursing home, or extra home caregivers.
  • Retain the services of a home care agency that specializes in caring for people with dementia or Alzheimer’s. Go online for a referral or contact a home care state association for a list of agencies.

 

Alzheimer’s and dementia cause a lot of stress in families and their loved ones, but there are plenty of resources to help caregivers cope and reach out for assistance when it is needed. Families and their loved ones need to know that they are not alone, and there are people willing to help them through these difficult times. For more information on Alzheimer’s and dementia, visit alz.org.

 

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