Mary Read had been a nurse for years, using her extensive training to care for patients in nursing homes and doctors’ offices.
“But all of a sudden I was forgetting stuff,” she says. “I didn’t understand what the doctor wanted me to do — and it was stuff I’d been doing and suddenly couldn’t do.”
She had trouble calculating a patient’s height from inches to feet, for example, or she would forget how to spell the doctor’s name.
It was stress, they thought. Maybe a virus attacking her brain.
“I was fired from my job,” she says. “I knew something was wrong.”
She went to her family doctor for a dementia test. At Lancaster General Health’s Memory Center, she underwent scans. “They did an MRI. They did a lot of memory testing. And that’s when I was diagnosed.”
Read, married and the mother of a daughter, had Alzheimer’s disease.
She was 50 years old.
In the seven years since then, the Lititz resident has become an advocate for those who have received that diagnosis.
She has worked to create a structure and a way to support both her physical and emotional health, with the dual goals of slowing the impact of Alzheimer’s and maintaining her memories and ability to learn new skills. She serves as an Alzheimer’s Association ambassador, speaking to local groups and canvassing Congress.
And she started the local Memory Cafe, a support group for people like her, diagnosed in the early stages, as a safe place to socialize and find kindred spirits.
One of Read’s goals is not only to help those who have been diagnosed — it’s also to build a pathway for friends and family. They may not know how to react or how to help their loved one; they may not realize how their lives will change as well. How both the diagnosed person and their caretakers adapt, Read says, can make an immense difference in how the journey plays out.
Stigma and denial
Stigma and denial are common, says Dr. Matthew Beelen, a geriatrician at Lancaster General Health. “If people have mild symptoms and are afraid of the diagnosis,” he says, “they can be very upset when we confirm a diagnosis of dementia.”
Beelen, with his 14 years of providing dementia care, also has a personal interest in how people are diagnosed with memory disorders and maintain enjoyment in life afterward: Two of his grandparents died of dementia and a third is living with that diagnosis.
“When we make the diagnosis of dementia, we have to remember that it is a label, but it doesn’t change who a person is,” Beelen says. “They are the same person after the diagnosis as they were the day before.”
The numbers of families that will face this challenge will only increase, Beelen adds. There are a couple of reasons for that. One is that the medical community is able to diagnose more people earlier.
“The general public is more aware of the diagnosis of dementia and that there are things we can do to help,” he says. “The baby boomers are now entering the age where dementia incidence is increasing. They have often experienced their parents living with dementia and often are proactive about seeking diagnosis and treatment.” And that, he says, leads to earlier diagnosis.
More physicians, too, are aware of the subtle early signs, he says, which leads them to refer patients to specialists or start the diagnostic process themselves.
“Unfortunately,” Beelen says, “there are still many in the general public, and many health providers, that feel memory loss is a normal part of aging, or that there is really nothing that can be done about it. So we are still seeing people who are seeking help late in the condition, often as a crisis is developing.”
Read’s diagnosis fit the definition of early-onset Alzheimer’s, sometimes also called younger-onset: under the age of 65, according to the Alzheimer’s Association.
She went into a severe depression, she says now, “because I was thinking about the later stages. Then I gained so much weight, just crying and eating, that I felt worse So I just kept praying: ‘You know, if I can’t be cured of this disease, help me to help others.’ ”
Through the local Alzheimer’s Association group, Read began talking to other people who were newly diagnosed. She had trouble at the time finding a support group in which she fit because they were geared to the needs of the caretakers, not persons who had been diagnosed.
So she started Memory Cafe for people like herself, then helped Lancaster General with its support group.
Many people don’t believe, aren’t aware of, or minimize the severity of dementia in younger patients she says — including some in the medical community. The more upset she would get about that, she says, “of course, the worse I would get.”
Or, she says, she’ll be having difficulty out in the public — making a decision about what present to buy, for example. “I’ll say, ‘You know, you have to be a little patient with me because I have Alzheimer’s.’ (And the other person will respond,) ‘Oh yeah! So do I!’ It’s a joke to them.”
So Read has rearranged her life. Marriage, she says, “involves a whole new way of communicating” with her husband, George. (Their daughter lives in Arizona.) Read’s mother, just down the road, often helps out. She got a dog, Princess, who helped her work through her post-diagnosis depression and now rarely leaves Read’s side.
“She reminds me to take my meds every day. … She can tell when I’m having a bad day and tries to help me if I’m upset or agitated.”
Read threw herself into advocacy work with the local Alzheimer’s Association chapter. She took — and passed — a driving test to ensure her skills still are adequate. She traveled just last year to California, and made a monthlong religious pilgrimage to Portugal, France, Bosnia and Rome.
Since her diagnosis, she has taught herself to quilt by watching YouTube videos; uses smartphone technology such as Notes and its alarm to remind herself of tasks; works out every morning at the gym; and prays the Rosary each day while watching recordings of Mother Angelica, the nun and television personality who died last year.
That routine, boosted by a religious faith that Read says has been her bedrock, is part of Read’s determination to do what she can, and enjoy what she can, for as long as she can.
Activity, structure, simplification and maximizing happiness all work together to “preserve a higher quality of life, longer,” geriatrician Beelen says.
“It is easy to think of the abilities that are lost or things that are failing,” he says, “but we must not forget that there are many abilities that are retained, many aspects of the individual that remain.
“We must not forget to emphasize and celebrate these things as we, at the same time, help our loved ones adjust to the changes that develop.”
What can family and caregivers do?
Mary Read, who has early-onset Alzheimer’s disease, and geriatrician Dr. Matthew Beelen, of Lancaster General Health, shared some ways to support a loved one who has received the diagnosis:
- Keep communication simple and questions minimal to prevent frustration. Don't point out that the person is repeating herself, or quiz him to see if he remembers something. Don't keep asking, “Do you know who I am?” Remind the person of who you are: “Hi, I'm your neighbor Mary.”
- Try to be patient and reassuring. Anger and frustration only agitate, and the person is not deliberately being difficult; It's the disease. “People tend to want an answer right away,” Read says. “Give me time to answer.”
- Never tell someone in the early stages of dementia that they can’t do something. “(Husband) George definitely knows not to tell me that,” Read says while laughing. “That was the case before my diagnosis, and it’s only more so now!”
- “Don't be afraid to talk to us. A lot of people, right away they don't talk to us because they’re afraid; they don’t know what to say. … Well, just talk to me like you did before the diagnosis.”
- "Please don’t laugh and make jokes about Alzheimer’s,” she says. “You don’t laugh at someone suffering with cancer, so why do it with someone suffering with Alzheimer’s?”
Dr. Matthew Beelen:
- “Simplification and repetition both can be helpful.” Communicate smaller amounts of information at once, and check for understanding. Focus on key information. Talk to the person one on one in an area with few distractions and little background noise. “Many individuals with dementia tend to avoid talking in groups and participating in conversation because … they don’t want to make mistakes.”
- Simplify complex tasks as dementia progresses, or relieve loved ones of more complicated ones, such as keeping track of finances or preparing all parts of a meal.
- Provide structure. Have a standard order of tasks every day. Put commonly used objects — such as keys, eyeglasses, phones and purses — in the same place all the time. Keep to a meal and bedtime schedule.
- Help the person stay physically active. “It has been shown to help slow down memory loss,” Beelen says. Social activity with familiar family and friends, and mental activity through hobbies and activities that are more active than passive. Playing music, playing games, creating artwork and doing puzzles help to keep the mind strong.
- Limit stress; maximize happiness. “The brain does not operate as well when it is emotionally or physically stressed.”
- Think about and address hard decisions sooner rather than later. Settle advance directives, such as medical and financial power of attorney documents and living wills. Do estate planning, such as wills, trusts and management of retirement funds, early on. Plan what will be done when the individual no longer can drive or can’t live alone, or when family members will need more help to provide care.
- Seek out support: Hospitals memory centers, a support groups, the person’s primary-care provider, the county Office of Aging, the Alzheimer's Association and elder law attorneys all have resources to share.
- Professionals can “help families prioritize what items need to be addressed first, and the professionals experienced in dementia care can help address these things in a way that can minimize confrontation distress” for the person who has memory loss and the caregivers as well.