When the Burden of Alzheimer Caregiving is Too Much

HYANNIS – Symptoms of dementia can be confusing and complex; not only for those diagnosed, but for their family and friends as well. Which is why theAlzheimer’s Family Support Centerof Cape Cod (AFSC) andCape Cod Healthcarerecently teamed up to offer free monthly support groups to those diagnosed with dementia-related illnesses (Alzheimer’s disease, lewy body dementia, and memory impairment), as well as for their caregivers.

The two groups, which are based at Cape Cod Hospital in Hyannis, are held from 5:30 to 7 p.m. on the third Wednesday of every month. They run separately, yet simultaneously, and cater to those dealing with early-stage dementia and their caregivers.

The goal of the discussion-based groups, according to Vaughn Harding, clinical director for AFSC, is to help dementia patients and their caregivers face challenges associated with these long-term illnesses. Not only does each group address topics like the effects of medication, clinical trials, and educational research, members also have the chance to speak about their personal hardships and successes in a safe space, according to Harding.

Seek Support Early

“Those who engage in support services earlier in their disease progression, cope better over time,” Harding said. “Research shows that people bond and form relationships, which benefits their overall health and disease progression.”

The AFSC support groups, which can also be found in many towns across the Cape, are open to anyone dealing with dementia-related illnesses. Patients who attend the Cape Cod Hospital location can also benefit from a mini-mental state exam (MMSE), which will be administered to group members by Harding. The exam, which is a 30-point questionnaire and is used extensively in clinical and research settings to measure cognitive impairment, can estimate the severity and progression of an individual’s disease.

Because the outcome of an MMSE can follow the course of cognitive changes in an individual over time, Harding said it’s a great tool that caregivers and counselors can use to document a participant’s response to treatment.

In addition to the exam, Harding will meet with caregivers and patients individually, prior to attending their first support group, to make sure they have a good idea of what the meetings are all about.

“The exam and the meetings are just so we can get to know each other a bit and make sure they willingly want to get involved,” Harding said. “Having an idea of what they are getting into makes them feel more comfortable and they know more of what to expect.”

Many Cape Patients

Because age is the number one risk factor in developing dementia, and the Cape‘s population is the oldest in the state, the number of people that have developed these medical conditions has reached epic proportions, with roughly 10,000 families, individuals, and caregivers currently living with Alzheimer’s and other dementia-related illnesses on Cape Cod, according to the AFSC website. And because there are no medical treatments that cure dementia-related illnesses – only remedies that slow progression – physicians rely heavily on support groups to help supply education and counseling throughout disease advancement, said Cape Cod Hospital neurologistMichael Markowski, DO, FAAN.

“Support groups are essential for Alzheimer’s and dementia patients, as their degree of illness and cognitive impairment progresses,” Dr. Markowski said. “The more resources the better.”

Another factor that limits physicians’ ability to supply adequate support services is insurance. While Dr. Markowski and his fellow physicians work closely with patients’ primary care physicians to monitor and treat adult neurological disorders, and provide as much in-office guidance as they can, insurance plans limit the amount of time physicians and medical staff can spend with patients, he said. While that in itself is a problem, their caregivers can’t use their insurance for counseling without a specific dementia-related diagnosis, which leaves them with virtually no support at all.

For Dr. Markowski, who is also a member of theAmerican Academy of Neurology, it’s a problem that is solved somewhat by the AFSC’s free research-based family and community-centered social model.

“There are so many social aspects about these diseases that we can’t delve into even though we want to, due to time restrictions,” he said. “Which is why it’s so important that these support groups exist. They help provide better care to our patients as well as their loved ones.”

By continuing to work with other businesses and organizations like Cape Cod Healthcare, AFSC will not only be able to continue to provide support groups, but also personalized care planning and consultations, referrals, outreach, dementia training, and special events and activities, saidMolly Perdue, PhD, co-founder and executive director of the group.

“The only way we can create a true support system for these families is to collaborate with other entities that are already out in the community doing great work,” she said. “Connecting people earlier to support services is going to allow us to provide more help over the long haul.”

Harding agreed and feels that AFSC, and its support group component, is already helping thousands of families across the Cape avoid crisis, and live amazing lives despite memory impairment.

“We are trying to put a scratch in the big picture here and allow people to live as normally as possible,” he said. “It’s incredibly gratifying and magical to see caregivers and patients connecting with one another in a meaningful and productive way.”

The Dementia-Related Illness Support Group and the Caregiver Support Group meet from 5:30 to p.m. the third Wednesday of every month at Cape Cod Hospital, 27 Park Street, Hyannis in Davenport-Mugar Cancer Center. The Dementia-Related Support Group meets in the Lorusso Conference Room in the Mugar Wing of the hospital, and the Caregivers Support Group meet in in Conference Room 5 in the Mugar Wing. To enroll or for more information, visitAlzheimer’s Family Support Center of Cape Codor emailcapecodaffc@gmail.com.

By RACHAEL DEVANEY, Cape Cod Health News

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