WRIGHT-PATTERSON AIR FORCE BASE, Ohio – When the news is given to a patient and their family members that their loved one has been diagnosed with Alzheimer’s, it can be devastating for some or motivating for others. Either way, Maj. (Dr.) Earl Banning, director of Neuropsychology at the Wright-Patterson Medical Center, stresses the importance of family members working together to deal with what lies ahead.
Some people genetically have a higher chance of getting Alzheimer’s. People with first-degree relatives (an individual’s parents, full siblings, or children) with Alzheimer’s increases an individual’s own risk of having Alzheimer’s, according to Banning.
“Sometimes adult children are now coming in with their father and are worried about dementia. I’m delivering the news that this probably is Alzheimer’s. The children may remember what grandpa went through. They may remember grandpa’s decline and his later years in the nursing home when he didn’t recognize anybody. When they hear that news, it can be triggering to a lot of emotions, so family members may need therapy on their own just to process watching their parents go through this,” he said.
The decisions families have to make upon hearing this news are sometimes quite difficult, but Banning has a wealth of information he can provide them to help in dealing with the disease.
“For most of the people that come in, I’m telling them, ‘Let’s get all of your affairs in order. If you don’t have a will, let’s have a will. If you haven’t made decisions about property and things like that, let’s do that now because as people may lose cognitive functioning later on, you don’t want to be trying to make those decisions then.’”
After diagnosis, Banning also lets patients and their family members know it’s important to start making a long-term plan so that may mean going home, meeting with children and extended family members to understand the way ahead.
“If they have depression, I’ll refer them for counselling. Most of the older folks will be seen off-base typically, but getting them into therapy, putting them in touch with resources like the Alzheimer’s Association at www.alz.org, or the National Institute of Health website at www.nih.gov. These sites have resources about Alzheimer’s that explains it to people, as far as what it is, what the progression looks like, where their loved one is at.”
Some things Banning shares with patients may seem rather obvious, such as the things your mom told you to do like eat right, sleep right, take care of yourself and exercise.
“Those are things that can help with that cognitive reserve and help to prolong people’s health. If you have uncontrolled diabetes, that will be a factor; if you have uncontrolled cardiovascular risk factors, high cholesterol, high blood pressure.”
Taking care to make sure things are safe at home is another important step, Banning said.
“Some older folks live in older homes with multiple floor levels, which create falling hazards. Maybe it’s time for a one-level home. Head injuries can be a problem. If you’re already having some cognitive problems, the last thing you need is a head injury, so maybe we don’t need a bunch of steps in the house anymore. Moving furniture around so there are less things to trip over or fall on as you get older is important.”
For some people, receiving the news of an Alzheimer’s diagnosis isn’t really a surprise.
“Family members are kind of prepared. We have the Internet now, which makes you always think you have health problems so family members read up about Alzheimer’s before the evaluation and they can probably tell you as much as I can about some of this stuff and are well aware of some of the recommendations.”
Banning believes it’s important for the family to be involved and requests they come to the initial and feedback sessions to talk about the symptoms and what stage he thinks the person is in for Alzheimer’s. They discuss what to expect and Banning then points them in the direction of different resources such as support groups in the area that focus on provider fatigue.
“There’s a lot of issues that come along with taking care of a parent. Some people may have more resources than others. Sometimes it’s just a dad and a sibling – a son that lives in the area for instance. The wife has already passed away and there’s no other family to take on that care. Financial decisions, money, nursing homes, all those big things. Even if they’re not ready to go somewhere, and it may be a while – getting all those things worked out as a team now while the person has as much cognitive reserve as possible, rather than waiting until we see an alert for a lost adult,” said Banning.
“Sometimes it can be pretty devastating, for instance, something like a frontal temporal dementia looks very behavioral so the person may be acting manic and they may be doing things like buying a bunch of things online. For example, this one woman I worked with a while ago had these symptoms and had been diagnosed as bipolar and she and her husband came in to the neurology center to see me so that we could get an assessment battery. The hope was that if we could just get her meds right, she’s going to be OK,” Banning said.
However, the neuropsychology assessments revealed she had been misdiagnosed.
“You don’t get bipolar when you’re in your mid-60s. What was happening was that she had atrophy in her frontal lobe – she had frontal temporal dementia and that’s where your personality is. That’s where the breaks are. If you ever have like an impulsive thought, like maybe I can’t do that, maybe I can’t cut in front of the line. When the frontal lobe atrophies, those brakes don’t do that anymore so you have these behavior problems. I had to deliver the news to them that it’s a progressive disease, she has frontal temporal dementia, and she’s not coming back. It was pretty heart-wrenching for the family members,” he said.
Typically, that’s the case, Banning said, but for people in some variance of Alzheimer’s their awareness is pretty poor so they come in looking fine.
“They’re pretty happy when they come in,” said Banning. “I’ll ask them how they’re doing. They’ll say, ‘I’m doing ok.’ How’s your balance? ‘It’s fine.’ Well, you came in in a walker today. ‘Oh, I don’ need that thing.’ How’s home life? ‘It’s going great.’”
The older you get, the slower the decline will be.
“If you don’t get an Alzheimer’s diagnosis until well after 80, you’ll probably have a really slow decline and may die of other things before it really gets that bad,” Banning said.
Alzheimer's disease is more likely to affect Americans as they grow older. Although genetics can play a part, age is the biggest risk factor. But Alzheimer's touches many more individuals than just those who are diagnosed. Dedicated caregivers such as professionals, family members, or friends are also emotionally, physically, and financially affected by the disease.
For more information and resources in support of this type of care, visit www.alzheimers.gov.
Editor's Note: This is the second of a three-part series of articles about Alzheimer's disease, how it affects patients, family members, and how they work together to battle this terminal disease.