Mclean Hospital

Finding Hope and Help After a Dementia Diagnosis

By Alexis Freedberg, MD

October 4, 2019

Geriatric psychiatrists treat a range of mental health issues that can happen later in life. A high percentage of older adult patients have dementia, but not all problems with memory and cognition are symptoms of the illness.

Some cognitive changes are normal with aging. Many adults see their parents struggling to learn new technology or juggle multiple tasks at the same time. These older adults might be intellectually capable, but it takes them a little longer to process complex information. Changes like trouble retrieving the right word or forgetting names are often normal parts of aging.

It’s a little more concerning when older adults are no longer able to manage their schedules and affairs, or when they make up new words for familiar things, such as “neck wrap” for “collar.”

It is also concerning when an older person has an unexpected personality change, such as when someone who was once very proper starts cursing, interrupting others, or being overly flirtatious. Behaviors like these can be early signs of dementia.

Reaching a Diagnosis

A geriatric psychiatrist usually becomes involved in people’s lives well after the diagnosis of dementia.

Most primary care doctors can diagnose the illness by taking a detailed medical history and doing a physical exam. They’ll also likely review a medication list and check blood work, and they might order imaging.

Almost always, there are other clues that are important in getting the diagnosis right. Sometimes an older adult will say to the doctor, “I’m becoming more forgetful,” or “I’m not able to do these things anymore.” Other times, the patient is not totally aware of the changes that are happening or cannot describe them with enough detail for the primary care physician to understand the situation.

Older adult speaks with clinician
Some cognitive changes are normal with aging, but other more serious behaviors may be signs of dementia

It can be delicate for a family member to bring up the issue of memory loss. A son may call his mother’s doctor ahead of time and say, “Heads up: I’m worried about this—will you check my mom?” Or a woman may accompany her husband to a doctor’s appointment and say, “This is really difficult to bring up, but this is what I’m noticing. I just want to have the best information possible.”

Other times, if someone doesn’t have family nearby, an apartment building manager may notify elder services that an older tenant is no longer able to manage their home, which can trigger a medical evaluation.

When memory issues are handled sensitively by health care professionals—which they usually are—most patients are not resistant to the idea. When patients feel they’re doing something about the situation, it can be therapeutic, since taking action can help them feel empowered, and can lead to getting answers and help.

Coping With Change

Many people, both patients and their families, fear a diagnosis of dementia because it can mean losing key abilities and even one’s cherished memories or personality. With support, individuals with dementia can retain skills and participate in their former activities for many years.

Personality change doesn’t always happen, and even when it does, it is not always for the worse. I remember fondly one woman who had always been proud and even critical of others, but as her Alzheimer’s progressed and she received good care, she became kinder and more affectionate.

If it’s disturbing to think of one’s personality changing, consider that our personalities change throughout life. We’re changing all the time, in terms of our interests, our behavior, and our identity. Dementia is another kind of transition.

Most individuals with dementia are not miserable. They find joy and humor and connection, though sometimes in new places. Many people with dementia are content and fulfilled, gradually adjusting to life with a few more challenges.

Destigmatizing dementia is hugely important. Patients often feel so much shame when they receive a diagnosis. They might think others won’t want them around anymore, or that they won’t be able to participate in social networks and groups. This simply isn’t true. It helps to have a friend or a family member who can say, “Mike is going to repeat himself a lot,” or Mike might be able to say, “Forgive me, I might repeat myself—that’s just the Alzheimer’s.”

Keeping an Open Mind

Sometimes, we might see a person with dementia behaving a certain way, and we think we know how they’re feeling. We’re influenced by how we think we’d behave in a certain situation. In such cases, it’s important to think of what the person’s needs are versus the caregiver’s needs.

For example, many patients with dementia show signs of what doctors call “apathy,” which can look like a loss of initiative or interest in pursuing activities. When someone grows more passive, as happens with apathy, others can be tempted to say, “This person is depressed,” or “This person seems sad, and that’s the reason they’re not engaging in as many activities.”

In reality, the person may not feel sad or depressed, and may be content with their new activity level. Apathy is a common part of the larger illness. It’s hard to see your previously life-of-the-party mom or CEO-spouse slowing down, or not taking charge. But one of the things I really try to look closely at is whether this change is something that is distressing or worrisome to the patient, or whether it is accompanied by other signs of anxiety or depression. Often, it isn’t.

When you interact with someone who has dementia, nonverbal communication is often what’s most important. Your body language, the tone of your voice, and the warmth of your face can make all the difference.

Doctors may prescribe medications to treat apathy, but these drugs often have side effects and don’t always help patients feel better. Medication might help patients look a little more like their old selves, which can be helpful to family.

Many organizations are tapping into the power of movement, creative arts, music, and even improv theater to improve the lives of people with dementia. In my experience, these programs are more likely than medications to help with apathy. It’s important for family to receive support and education so they can know change is part of the process: your mother is fine, although it may be painful to see her not doing some of the things she used to.

Helping the Helpers

In many ways, a caregiver’s experience with dementia can be harder than that of a patient. The work of caring for someone with dementia can be so all-encompassing that it can be challenging for family to adjust.

Caregivers often work 24/7 to complete tasks that range from managing a schedule to bathing and toileting a parent. Caregivers are often isolated, and can suffer themselves from depression, anxiety, and grief. Some moments of lightness surface, but caregiving can be a tough job, and is often unpaid.

Our health care system must better address the needs of older adults with progressive cognitive disabilities.

Some family members assume they’ll put their loved ones in nursing homes when it’s time, but many don’t understand that a nursing home costs well over $100,000 per year. In 2018, unpaid dementia care—that is, friends or family taking time out of their own busy schedules to care for people in their community—averaged 22 hours per week in the US, and was valued at $244 billion.

Dementia caregiving is a key social and public health issue for women, especially, since two-thirds of caregivers are women—many of whom must give up other opportunities to provide care. This gender disparity takes a disproportionate social, financial, and physical toll. If we provide more assistance and education for all caregivers, then the burdens won’t be so great.

Caregivers should try as much as possible not to go it alone. Those who don’t have time to attend a support group in person might find comfort in a Facebook dementia caregiver support group. Group participants post comments such as “This is the terrible day I had,” or “This is the win I had,” for example, or “What do you suggest I do when my wife can no longer do this?” There are even apps to help caregivers troubleshoot day-to-day challenges.

Living in the Moment

In my work, I help those with dementia—and their families—process and manage loss, change, and transitions in their lives. Obviously, there can be suffering and hardship, but patients and their families are often able to find new communities of support and new sources of meaning and even joy.

People with dementia are some of our best mindfulness teachers, since they are living in the moment like no one else. Particularly for those who have Alzheimer’s disease, the most common form of dementia, the past is the present. When you interact with someone who has dementia, nonverbal communication is often what’s most important. Your body language, the tone of your voice, and the warmth of your face can make all the difference.

People with dementia are some of our best mindfulness teachers, since they are living in the moment like no one else.

A person whose language has broken down as part of the illness can still retain social graces and gestures. One can and should converse freely and sensitively, trying extra hard to read any nonverbal cues. Even if someone won’t remember the talk, you just had a meaningful, human interaction. There is something essential about a connection that doesn’t only involve the exchange of intellectual information. It is a type of connection that is beyond words.

Taking Action

We can feel helpless when we face a topic like dementia, but taking action can empower us. We can become involved in the Alzheimer’s Association and the Alzheimer’s Impact Movement, and can consider participating in a research study, such as those conducted at McLean.

Individuals with cognitive concerns shouldn’t hesitate to talk with care providers. People who know someone who has a loved one with dementia can ask how to help.

We should try to think of dementia as affecting more than just individuals. It affects entire families, and by extension, our larger communities. It is our collective responsibility to advocate for increased resources for an illness that will affect nearly all of us.

With more resources, less stigma, and a better understanding of the experience of living with dementia, we can improve the lives of millions.

Learn More About Dementia

You may find these informational resources helpful:

Alexis Freedberg, MD, is a geriatric psychiatrist specializing in the complex medical and behavioral needs of older adults. She is currently a psychiatrist in charge at the Geriatric Psychiatry Inpatient Services at McLean Hospital and an instructor in psychiatry, part-time, at Harvard Medical School. Additionally, as medical director of Behavioral Health at Perfect Health, Inc., she leads a team providing mental health care for homebound older adults with complex medical needs, utilizing a primary care integration platform to improve access and outcomes.