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Alzheimer’s caregivers face a difficult path in providing care and support for a loved one with what is currently an incurable disease. One in nine U.S. residents age 65 and up has Alzheimer’s, the most common form of dementia, and women make up two-thirds of patients, according to Alzheimer’s Association. Over 55 million people worldwide have dementia, and 10 million cases are added each year, according to Alzheimer’s Disease International.
Receiving a diagnosis is devastating for the individual and for family members and friends responsible for caring for someone with Alzheimer’s. “A lot of people begin to mourn their loved one when they get the diagnosis because it feels like the end,” said Katie Skolsky, director of NewBridge Services’ NewBridge@Home. The program provides in-home counseling and support for homebound Morris County residents age 60 and up, and their caregivers.
Alzheimer’s disease is a progressive, irreversible brain disorder that destroys memory and thinking skills. As the population ages, the number of affected seniors is expected to increase from 6.7 million in 2023 to nearly 12.7 million by 2050, the Alzheimer’s Association reported. Deaths from Alzheimer’s more than doubled between 2000 and 2019, and it now claims more lives than breast cancer and prostate cancer combined, according to the association.
“For caregivers, it’s very important to have support and know that you’re not alone,” said Skolsky, who has nearly a decade of professional experience caring for people with Alzheimer’s and other dementias. She recently developed an hourlong course on understanding the disease and how Alzheimer’s caregivers can cope. It will be offered at senior centers and older adult residences.
“There will be hard days, but you can have beautiful moments too,” she said. For World Alzheimer’s Month, Skolsky answered questions about handling the role of Alzheimer’s caregiver, and issues such as caregiver stress.
Q. What can a new caregiver expect when a loved one is diagnosed with Alzheimer’s?
KS: It’s really difficult at first. They are no doubt going to be upset, and it’s going to be stressful. They likely will feel scared, isolated, maybe angry, and experience a sense of loss. It’s so important for Alzheimer’s caregivers to educate themselves as much as possible so they know what to expect and can deal with it.
Q. What are the behavioral changes of Alzheimer’s patients, and how does that impact Alzheimer’s caregivers?
KS: In the early stage, symptoms are generally mild and the person can remain largely independent, though they may forget familiar words and the location of commonly used items, and have trouble planning and organizing. As they progress through the stages, they’ll need more help with day-to-day routines, and will exhibit personality and behavior changes, becoming more angry and frustrated. In Alzheimer’s late stage, caregiving becomes much more intense. The person will need round-the-clock care, with Alzheimer’s caregivers having to help with bathing, dressing and feeding as the person loses their physical abilities.
Q. What qualities should a caregiver possess to work with Alzheimer’s?
KS: Patience, understanding and caring. Be prepared that your loved one may start to say things that are hurtful because the disease affects their personality. It’s best to let that roll off, and move onto other topics. Redirection is a big part of it. Do your best to understand that your reactions affect the environment, and if you react negatively, it’s likely to worsen the situation.
Q. Why is it important for a caregiver to have good mental health, and what helps?
KS: Being an Alzheimer’s caregiver is demanding, and making time for your well-being is important, even if it’s just taking a half hour before bedtime. When you experience stress, anxiety or fatigue, ask for help. Talk about what you’re experiencing with family members and friends. Take advantage of respite care programs if you’re feeling burned out.
Q. What type of support is available to families with Alzheimer’s through NewBridge?
KS: NewBridge helps families develop a plan. Through NewBridge SAIL [Senior Assistance for Independent Living], the client receives health evaluations by a registered nurse, and case management services. NewBridge SAIL also connects Morris County residents age 60 and over with community services, such as home health services and bill-paying assistance. Through NewBridge@Home, both clients and caregivers can receive weekly one-on-one counseling. Visit NewBridge’s website at newbridge.org or call (973) 316-9333.
Q. What is your best advice for someone caring for a person with Alzheimer’s?
KS: When your loved one gets the diagnosis, try not to think it’s the end. Talk to your loved one now about how to plan for when the disease gets worse. It’s hard and you’ll have to come to terms with that. Turn to others for support. And take time for self-care.
Q. As a friend, how do you emotionally support a caregiver?
KS: Caregivers are going to need outside support, especially from friends. If you are a friend of a caregiver, reach out to them and ask them how their stress levels have been, support and encourage them to take a needed break, listen attentively, and offer to help if you can. Most importantly, do not exclude them from social activities because that could lead to them feeling isolated. Just being invited can be an emotional boost.