A diagnosis of Alz-heimer's disease often is something that effects the whole family. It is difficult for family members to see their elderly loved ones change, and many times, a spouse or child must become caregiver to the Alzheimer's patient.
Dorothy Barto is director at the Alzheimer's Assistance and Referral Network, a nonprofit organization based in Boardman that serves Trumbull, Mahoning, and Columbiana counties in Ohio and Mercer County in Pennsylvania.
"It's a lengthy illness and not the easiest thing," Barto said. "Alzheimer's is not a pleasant diagnosis, but it is not the end of things. There are medications and ways to improve the quality of life for Alzheimer's patients."
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Diagnosis is the first step in planning to help the Alzheimer's patient and the caregiver.
"Alzheimer's dementia may start developing in the brain 20 years before you see the first symptom," said Scott Entzi, licensed nursing home administrator at Ivy Woods Manor in North Lima and group facilitator of the Greater East Ohio Chapter of the Alzheimer's Association. "The person will start losing their short term memory, but will still have their long-term memory."
"We advise people who are concerned about their loved one with Alzheimer's to make sure that their family doctor knows what is going on," Barto said. "Patients need a good medical workup and even a second opinion. Sometimes that includes a visit to the neurologist."
Fact Box
Support available
The Alzheimer's Assistance and Referral Network has an Alzheimer's support group at the Girard Public Library at 6 p.m. on the third Tuesday of each month.
The network also has an Alzheimer's support group at 10 a.m. on the first Wednesday of each month at the Children's Rehabilitation Center in Howland.
Know the warning signs
According to the Alzheimer's Association, the 10 warning signs of Alzheimer's are:
Memory loss that disrupts daily life
Challenges in planning or solving problems
Difficulty completing familiar tasks at home, at work or at leisure
Confusion with time or place
Trouble understanding visual images and spatial relationships
New problems with words in speaking or writing
Misplacing things and losing the ability to retrace steps
Decreased or poor judgment
Withdrawal from work or social activities
Changes in mood or personality
Fortunately, there are resources available locally to help families of Alzheimer's patients.
Pam Schullerman, executive director at the Greater East Ohio Chapter of the Alzheimer's Association in Hudson, said that the Alzheimer's Association also has offices in Akron, Canton and Youngstown.
"On every level, Alzheimer's disease is a struggle financially, with nursing home costs, and emotionally, with the idea that your loved one no longer remembers you or your children," Schullerman said. "The hardest part is managing the behavior of the disease and also managing a caregiver. A caregiver might have children, a family and has to work. There are also financial and legal considerations."
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"Caregivers sometimes have no idea how much paperwork is involved in taking care of a family member with Alzheimer's," Barto said. "The behaviors are so global, that they affect the horizon of a person's life. Sometimes the Alzheimer's patient will hide papers to protect them and because their memory doesn't work, they don't remember where they hid these papers. Even finding marriage licenses or insurance policies for applying for Medicaid can be difficult in these situations. You need to know where these papers are."
Heather Lambert, licensed social worker at Autumn Hills Care Center in Niles, said she sees a lot of Alzheimer's patients at the beginning stages of the disease.
Lambert said that support groups are the perfect solution for families with loved ones experiencing the disease.
"I think support groups are a wonderful network, because you sit down with someone just like you, having the same issues with mom or dad," Lambert said. "It's best to get help for Alzheimer's patients early, before the caregiver finds themselves exhausted. It's best to get support early and often."
Barto said that when going to an Alzheimer's support group, it's best to bring everyone from the family. This helps greatly, because everyone from the caregiver, the patient, close and intermittent relatives are all on the same page.
Lisa Solley, chief of community relations at the Area Agency on Aging 11 in Niles, said that there also are resources available to give respite to caregivers.
"There are a lot of multi-generational family units today, and it's difficult to be a caregiver all 24 hours of the day," Solley said. "Individuals with Alzheimer's might need adult daycare, and this type of care gives families peace of mind."
Adult daycare programs are beneficial for families who have loved ones with Alzheimer's disease. These programs provide caregivers of the family a sense of security that their loved one is being taken care of during the day, while they are at work or running errands.
As people are living longer lives, Alzheimer's may feature more prominently in the landscape of aging America.
"The post-war baby boomers are aging, and they are getting close to the age where Alzheimer's symptoms are appearing," Barto said. "The disease can last 20 years for a healthy person, and if they live longer, there will not be enough people to take of them. That is why Alzheimer's research is important. Alzheimer's is an epidemic, a quiet epidemic that sneaks up on people."