Strain of caring for someone with Alzheimer’s focus of awareness month

Published Nov 7, 2017 at 4:00pm

November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month.

The Alzheimer’s Association recognizes the more than 15 million people in the U.S., including over 1 million in New York, that are currently providing unpaid care to a person living with Alzheimer’s or dementia.

“Thousands of families in central New York are dealing with Alzheimer’s disease or other dementia,” said Catherine James, chief executive officer for the Alzheimer’s Association, Central New York Chapter. “We commemorate November as National Alzheimer’s Disease Awareness Month and National Family Caregivers Month to bring light to Alzheimer’s as the sixth-leading cause of death in America and the financial, familial, emotional and physical stress caused by caregiving.”

According to a recent Alzheimer’s Association survey, people overwhelmingly agree (91 percent) that caring for someone with Alzheimer’s or another form of dementia should be a group effort among family or close friends, yet one out of three caregivers (39 percent) are not engaging others in caregiving tasks.

The survey also revealed that more than four in five caregivers (84 percent) would have liked additional support in providing care for someone with Alzheimer’s or another form of dementia, especially from their family.

“In more than two decades with the Alzheimer’s Association, I have seen family after family deal with the stresses and demands of caregiving,” James said. “While each journey with Alzheimer’s disease is different, there is one common factor among them all: Alzheimer’s takes a physical and emotional toll on its caregivers.”

More than one-third (35 percent) of caregivers for people with Alzheimer’s or another dementia report that their health has gotten worse due to care responsibilities compared to 19 percent of caregivers of people without dementia.

As symptoms worsen and the amount of care needed continues to increase, caregivers report stress, anxiety and even depression at high rates. Nearly half of dementia caregivers indicate that providing help is highly stressful (49 percent) compared with 35 percent of caregivers of people without dementia.

The prevalence of depression and anxiety is shown to be higher among dementia caregivers than for those providing care for individuals with certain other conditions. For example, the prevalence of depression among dementia caregivers is higher than among those who provide help to individuals with schizophrenia (20 percent) or stroke (19 percent). Similarly, the prevalence of anxiety among dementia caregivers is 44 percent, which is higher than caregivers of people who have suffered a stroke (31 percent).

Further, the responsibilities of Alzheimer’s caregiving falls disproportionately on women. Alzheimer’s Association research shows that approximately two-thirds of caregivers are women.

According to the 2015 Behavioral Risk Factor Surveillance System survey, more than twice as many women caregivers as men spend more than 40 hours per week providing care.

Caring for someone with Alzheimer’s or other dementias is exceptionally demanding, and especially challenging. The Alzheimer’s Association offers its How to Help an Alzheimer’s Caregiver checklist to encourage people to lend a hand to a caregiver this month and year-round:

Learn: Educate yourself about Alzheimer’s disease — its symptoms, its progression and the common challenges facing caregivers. The more you know, the easier it will be to find ways to help. The Alzheimer’s Association has a vast amount of resources and information available at www.alz.org.

Build a Team: The Alzheimer’s Association Care Team Calendar is a free, personalized online tool to organize family and friends who want to help with caregiving. This service makes it easy to share activities and information within the person’s care team. Helpers can sign up for specific tasks, such as preparing meals, providing rides or running errands. Users can post items for which assistance is needed. Visit the Care Team Calendar here: www.alz.org/care/alzheimers-dementia-care-calendar.asp.

Give a Break: Make a standing appointment to give the caregiver a break. Spend time with the person with dementia and allow the caregiver a chance to run errands, go to their own doctor’s appointment, participate in a support group or engage in an activity that helps them recharge. Even one hour could make a big difference in providing the caregiver some relief.

Check In: Almost two out of every three caregivers said that feeling isolated or alone was a significant challenge in providing care for someone with Alzheimer’s or another form of dementia. What’s more, half of all caregivers felt like they couldn’t talk to anyone in social settings or work about what they were going through. So start the conversation — a phone call to check in, sending a note, or stopping by for a visit can make a big difference in a caregiver’s day and help them feel supported.

Tackle the To-Do List: Ask for a list of errands that need to be run — pick up groceries, dry cleaning or even offer to shuttle kids to and from activities. It can be hard for a caregiver to find time to complete these simple tasks outside of the home that we often take for granted.

Be Specific and Be Flexible: Open-ended offers of support (“call me if you need anything” or “let me know if I can help”) may be well-intended, but are often dismissed. Try making your offer of help or support more specific (“I’m going to the store, what do you need?” or “I have free time this weekend, let me stop over for a couple of hours so you can do what you need to do.”) Don’t get frustrated if your offer of support is not immediately accepted. The family may need time to assess its needs. Continue to let the caregiver know that you are there and ready to help.

Help for the Holidays: Holiday celebrations are often joyous occasions, but they can be challenging and stressful for families living with Alzheimer’s. Help caregivers around the holidays by offering to help with cooking, cleaning or gift shopping. If a caregiver has traditionally hosted family celebrations, offer your home instead.

Join the Fight: Honor a person living with the disease and their caregiver by supporting the Alzheimer’s cause. You can volunteer at your local Alzheimer’s Association office, participate in fund-raising events such as the Walk to End Alzheimer’s and The Longest Day, advocate for more research funding, or sign up to participate in a clinical study as a healthy volunteer through the Alzheimer’s Association’s Trial Match. Joining the cause can help families facing the disease know that they are not alone in their fight.

Resources for individuals at each stage of Alzheimer’s caregiving can be found at www.alz.org/care.