Holidays can be extremely stressful for caregivers and people with all forms of dementia and it may not be a coincidence that November is National Family Caregivers and National Alzheimer’s Disease Awareness Month.
“Obviously, this time of year, it’s difficult for everyone and particularly stressful for both the caregiver and the person they’re caring for because they don’t always deal well with situations that are out of the norm,” said Kathe Harris, facilitator of the local Dementia Caregiver Group for the past 18 years.
“Probably one of the most important statistics,” she said, “the one thrown out most commonly, is that there is a greater chance that the caregiver will pass before their loved ones because of the stress of caregiving and caregivers are also hesitant to reach out for the help they need.”
According to the Alzheimer’s Association Western Carolina Chapter, there are 356,000 caregivers in the state who provided 514 million hours valued at $7.3 billion. The association emphasizes that caregivers for those with Alzheimer’s and dementia face unique challenges. These caregivers are often managing multiple conditions, not only memory loss, but long-term physical conditions, including gradual loss of mobility, emotional issues, and behavioral and personality changes.
The Dementia Caregiver Group meets on the first Thursday of every month, from 1-3 p.m., at Brevard-Davidson River Church in Brevard and all are welcome. Harris pointed out to members when the group first started that she had seen dementia caregiving from both sides.
“In addition to being a private practice therapist I also was an adult protective service worker in Florida,” she said. “I spent a lot of time in nursing homes and visiting families that were caregiving. And then I became a caregiver.”
Harris’s husband was diagnosed with Alzheimer’s and passed away a number of years ago.
“It is both educational and supportive to help those who are dealing with loved ones with a diagnosis of some type of dementia – Alzheimer’s being the most common,” said Harris.
Guest speakers have included Four Seasons Hospice representatives discussing palliative care, physicians, nurses and this month, Edward Jones, family caregiver specialist from the Land of Sky Regional Council.
Jones said there are $500 respite vouchers available for Transylvania County caregivers, through federally funded programs (such as the Older American Act and the American Rescue Plan Act), that can be renewed until at least the end of June 2023.
“Basically the care receiver has to have some kind of dementia; it doesn’t have to be properly diagnosed, but noticeable memory loss, confusion,” Jones said. “Or, if they don’t have any type of dementia but still need care, they need to be at least 60 years old or older and have trouble with things like getting in and out of the bed, using the restroom, showers, eating, etc.”
These respite vouchers can be used to hire a friend, someone in the community or an agency worker, to provide respite care.
“(This includes) watching the care receiver while the primary caregiver gets a way for a little bit — to run an errand or go to the doctor or just take a drive to get away from the house for a little bit,” Jones said.
There are also additional state-funded services through Land of Sky that Transylvanian caregivers are applicable to apply for help, such as Project C.A.R.E. (Caregiver Alternatives to Running on Empty) which also provides $500 vouchers.
“Know that you’re not alone,” Jones said. “Even outside of COVID-19 it can be a very isolating experience because loneliness goes along with the duties of caregiving. Don’t be afraid to reach out for help — to us, to friends, to family.”
It is important to be specific when asking for help, said Jones, because caregiving can be overwhelming to the care provider. He gave the following examples of how to help a caregiver:
•Offer to sit with the care recipient;
•Pick up the groceries;
•Help with paperwork;
•Bring a meal;
•Clean the house;
•Help with laundry;
•Help find other caregiver services;
•Listen without giving advice;
•Mail a card or gift card; and
•Always ask if there is anything more helpful
For more information on Land of Sky resources, contact Edward Jones at (828) 251-7441 or email@example.com.
The Alzheimer’s Association – Western Carolina Chapter
Caregivers of people with dementia report providing 27 hours more care per month on average (92 hours versus 65 hours) than caregivers of people without dementia. Among all older adults with dementia, 77 percent receive assistance with at least one activity of daily living (ADL), such as bathing and dressing, in contrast to only 20 percent of older adults without dementia.
The average life expectancy following an Alzheimer’s diagnosis is four to eight years, but can be as long as 20. During the course of the disease caregiving tasks escalate and become more intensive.
Fifty-nine percent of Alzheimer’s caregivers report their emotional stress as high or very high (non-Alzheimer’s caregivers report 41 percent.) Meanwhile 35 percent report declining health because of caregiving (non-Alzheimer’s caregivers report 19 percent.) A recent national poll found 27 percent of caregivers for people with dementia delayed or did not do things they should for their own health.
Lastly, there’s a major impact on caregivers’ employment. Fifty-seven percent reported sometimes needing to go in late or leave early due to care responsibilities, 18 percent reduced their work hours and 9 percent gave up working entirely.
Six Essential Terms
•Person-centered care – Most often associated with professional caregivers in long-term care settings, person-centered care offers important guidance for family caregivers as well. It requires understanding the world from the perspective of the individual living with dementia. It encourages caregivers to take into account a person’s interests, abilities, history and personality to inform interactions and care decisions.
•Dementia-related behaviors – The term is used to describe wide-ranging behavioral symptoms associated with Alzheimer’s and other dementia. While most people associate Alzheimer’s and dementia with memory loss due to changes in the brain, there are several other challenging behaviors that can accompany an Alzheimer’s or dementia diagnosis, including aggression and anger, anxiety and agitation, depression along with many others. The Alzheimer’s Association offers tips and strategies to help caregivers address these and other disease-related behaviors.
•Caregiver Burnout – Caring for someone living with Alzheimer’s or another dementia can be exhausting – mentally, physically and emotionally. In fact, according to the Alzheimer’s Association 2022 Alzheimer’s Disease Facts and Figures report, Alzheimer’s caregivers report experiencing higher levels of stress than non-dementia caregivers. The Alzheimer’s Association offers Caregiver Stress Check to help caregivers identify and avoid caregiver burnout.
•Respite Care – Respite care provides caregivers a temporary rest from caregiving, while the person living with Alzheimer’s continues to receive care in a safe environment. These respite services can be provided at home — by a friend, other family member, volunteer or paid service — or in a care setting, such as adult day care or long-term care community.
•Care Consultations – A care consultation can help family members work through tough decisions, anticipate future challenges, develop an effective care plan. The Alzheimer’s Association offers free care consultations through its 24/7 Helpline (800-272-3900). During these consultations, master-level clinicians work with families to discuss wide-ranging, disease-related issues, including disease progression, care and living options and referrals to local support services.
•Treatment Pipeline – Currently, there are more than 100 disease-modifying Alzheimer’s treatments in clinical trials – researchers often refer to this as the treatment pipeline. Earlier this fall, positive topline results from phase 3 clinical trials for the treatment of early-stage Alzheimer’s disease were announced. These are the most encouraging results in clinical trials treating the underlying cause of Alzheimer’s to date. Caregivers and individuals living with Alzheimer or another dementia can play an active role in helping advance potential new treatments by enrolling in a clinical trial.
Eight Ways to Support an Alzheimer’s Caregiver
•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.
•Build a Team: Organize family and friends who want to help with caregiving. The Alzheimer’s Association offers links to several free, online care calendar resources that families can use to build their care team, share takes and coordinate helpers.
•Give Caregivers a Break: Make a standing appointment to give the caregiver a break. Spend time with the person living 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: Many Alzheimer’s and dementia caregivers report feeling isolated or alone. 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 – such as picking up groceries or prescriptions. Offer to do yard work or other household chores. It can be hard for a caregiver to find time to complete these simple tasks 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. Be specific in your offer (“I’m going to the store, what do you need?”). 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 facing 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 joining the fight against Alzheimer’s. You can volunteer with your local Alzheimer’s Association chapter, participate in fundraising events such as Walk to End Alzheimer’s and The Longest Day, advocate for more research funding, or sign up to participate in a clinical study through the Alzheimer’s Association’s Trial Match.To learn more about Alzheimer’s disease, support families and people living with the disease and information on the Alzheimer’s Association – Western Carolina Chapter, visit www.alz.org/northcarolina or call (800) 272-3900.