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Healthy Aging

Caregiver Resources

Facing Dementia in the Family

The medical care a loved one with dementia needs might be straightforward. Learning to handle their emotions (and yours) is anything but. These tips from a Johns Hopkins expert could help you both.

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Try It
Seek Out a Support Group

Caregivers need emotional support and the opportunity to speak freely about concerns and topics that might upset the person with dementia. Support groups are an excellent way to get “guilt-free” time away to share information, learn about new resources and feel connected to a community that understands your challenges better than anyone else.  

When you or a loved one first receives a dementia diagnosis, you may feel a range of contradictory emotions, sometimes simultaneously. Many people undergo a period of profound grief, with feelings of shock, denial and deep sadness. The prospect of facing this significant life change can make you feel demoralized, embarrassed or angry. You may even want to keep the diagnosis secret from friends or other family members.   

On the other hand, you may feel a sense of relief. Finally, your suspicions have been validated, and you and your loved ones can seek out more support and therapeutic interventions.

Even after you’ve accepted the diagnosis, your emotions can vary depending on the situation—the stage of the illness, your financial and social resources, and so on. Your best move—for you and your loved one—is to be educated and prepared, says Johns Hopkins expert Dierdre Johnston, M.B., B.Ch., B.A.O., M.R.C.Psych. These strategies can help.

Allow yourself time to adjust.

The shock of the diagnosis can be paralyzing. Be gentle and compassionate with yourself; allow yourself to move through the mourning process. Try to feel all the feelings, rather than deny them, and be up-front with your family and friends about your diagnosis. You’ll likely move into problem-solving mode faster.

Set up routines and expectations.

People with dementia don’t always believe they need help, so power struggles can ensue over daily tasks, warns Johnston. Clearly defined routines and predictable schedules for tasks such as cleaning and eating may help avoid some conflicts and help you both feel more settled. Orderly, peaceful environments also create calm.

Find an experienced dementia care counselor—for both of you.

One of Johnston’s studies found that when caregivers and people with dementia sought treatment for depression, they gained greater access to care, services and support. “Caregivers should have someone to talk to regularly, who can provide support, educate them about the illness and coach them on how to cope as it progresses,” says Johnston. 

Give each other space.

As the disease progresses, rapidly swinging moods and angry, negative outbursts can take a great toll on caregivers, Johnston says. Plus, more than 90 percent of people with dementia develop behavioral symptoms or psychiatric problems at some point during their illness. It’s perfectly OK to calmly say, “I need to have some privacy,” and leave the room to have a moment of peace, to allow both of you to calm down.

Pace yourself.

Caregivers may have trouble sleeping due to worry over their loved one’s needs, yet still not have anyone to relieve them the next day when they’re exhausted. The weight of all of these concerns can cause even the most resolute caregivers to experience stress, resentment and even depression. Rest when you can, and prioritize. Keep the day structured and predictable as much as possible, the environment uncluttered and activities simple, Johnston says.

Make time for daily exercise.

A daily walk in a park or just around the block can be an effective antidepressant and antianxiety remedy for both of you, says Johnston. If needed, keep a sturdy transport wheelchair stowed in the trunk to broaden your options for walks together while running errands.  

 

#TomorrowsDiscoveries: The Science Behind Memory Formation—Dr. Richard Huganir

Unique synapses within our brains encode new memories. See how studies on the molecular basis of memory formation can help researchers find new therapies for Alzheimer’s, age-related dementia, post-traumatic stress disorder, schizophrenia and autism.Discover more videos.

Definitions

Caregiving: The assistance family, friends and professionals provide to those who are old, sick or otherwise unable to care for themselves. Caregiving can include buying groceries, cooking meals, cleaning, assistance with bathing or personal care, making and driving someone to medical appointments, dispensing medicine, helping someone get in or out of bed, and more.
Dementia (di-men-sha): A loss of brain function that can be caused by a variety of disorders affecting the brain. Symptoms include forgetfulness, impaired thinking and judgment, personality changes, agitation and loss of emotional control. Alzheimer’s disease, Huntington’s disease and inadequate blood flow to the brain can all cause dementia. Most types of dementia are irreversible.

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