Learning that you or someone you love has been diagnosed with Alzheimer’s disease is devastating. You might feel shock, fear, grief or anger. These feelings—and many others—are all normal.
It’s important to take action as soon as you feel able. Early treatment and planning can slow the disease and improve your quality of life.
We spoke with Andrea Bozoki, MD, a UNC Health neurologist specializing in cognitive and memory disorders, about what people diagnosed with Alzheimer’s or another dementia should do next. These tips are written for the patient but can also be helpful for loved ones and caregivers.
1. Talk with your doctor about medication options.
Once your primary care doctor or a neurologist diagnoses dementia, it’s important to begin medication as soon as possible in an effort to slow progression of the disease. The most common drugs used to treat dementia are cholinesterase inhibitors, including donepezil, galantamine and rivastigmine. These drugs work by preventing the breakdown of acetylcholine, a neurotransmitter in the brain. “I talk with my patients about the pros and cons of taking one,” Dr. Bozoki says. “Then, I ask if they are ready to start taking them.”
Many patients ask about a new drug recently approved by the FDA, aducanumab, branded as Aduhelm. While there is a strong desire to provide new options to patients, many physicians and pharmacists do not believe the research shows that this drug is effective. UNC’s Department of Neurology has posted an update for patients on its website.
2. Educate yourself about Alzheimer’s.
Receiving a diagnosis of Alzheimer’s disease is overwhelming. “I give my patients a list of educational and support resources,” Dr. Bozoki says, “and I schedule a follow-up appointment with them in a couple of months to review what they’ve found and what they still need help with.”
Take time to absorb the news, read about the disease and come back to your next appointment with questions for the doctor. You can also call whenever something comes up. “People are often shell-shocked at the first appointment,” Dr. Bozoki says.
Finding a therapist with experience with dementia might be helpful; your doctor can help you find the right person.
3. Find a new community to support your journey.
Individuals living with Alzheimer’s and their families can benefit from connecting with others in the same situation. Because of the nature of the disease, caregivers will need to adapt to changes in the person living with Alzheimer’s over time. It can be helpful to hear about the experiences of people who have been through the progression of the disease.
Dr. Bozoki recommends her patients connect with the following organizations: Dementia Alliance of North Carolina, Duke Dementia Family Support Program and the national Alzheimer’s Association.
4. Assess safety at home.
Depending on the progression of the disease, your doctor may recommend several things to implement immediately at home.
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- Medication safety: A caregiver may need to take on the responsibility of filling and organizing medication in a pill box, or even giving the medication.
- Home safety: Think through daily needs in the kitchen and, if possible, replace old appliances with new ones that include safety features like automatic shutoffs. You may want to use stove locks or adjust the settings on a newer oven/stove so they can’t be used at night. Remove substances in the kitchen that might be mixed up or accidentally consumed as food. Take an inventory of hazardous materials, including cleaning supplies, sharp tools, and chemicals for indoor and outdoor use and consider securing or removing them. Make sure that fire alarms and carbon monoxide alarms are in good working order.
- Other safety concerns: Depending on your cognitive status, other areas may need to be evaluated. The Alzheimer’s Association offers a complete list to review safety at home.
5. Plan how you will get around safely.
A doctor might tell you or your loved one that it’s no longer safe to drive or refer you for a driving assessment. Family members may need to provide support, or you may need to find community support.
As dementia progresses, it may also be difficult for you to get around without getting lost. Can you walk around the block or to the coffee shop safely? If not, you can arrange friends and family to serve as walking buddies. A medical ID worn on the wrist can explain to anyone you might meet that you have Alzheimer’s disease or another condition, in case help is needed.
6. Make changes where you can.
Unfortunately, there is not yet a cure for dementia. But medications can sometimes improve symptoms, and certain lifestyle changes can improve overall health and quality of life for people with dementia. These tips are also relevant for any older person, with or without dementia.
- Diet: Experts recommend a combination of two well-known plans, the Mediterranean Diet and the DASH Diet, for aging adults, including those with signs of dementia, referred to as the MIND Diet (Mediterranean–DASH Intervention for Neurodegenerative Delay). This mainly plant-based diet emphasizes vegetables, fruits, whole grains, legumes and fish and unsaturated fats. It encourages reducing sweets, red meat and eggs.
- Exercise: If you are not already engaged in a regular routine of strength training and cardiovascular exercise, now is a great time to start. Walking 30 minutes a day, joining a strength class for older adults, or choosing an online or video workout to do at home can be a great way to start if you’re not in the habit. There are options for varying ages and different levels of mobility, including routines that incorporate balance and fall prevention, an important element for older adults.
- Sleep: Experts recommend seven hours of quality sleep per night for adults. If you aren’t getting quality sleep, you may be sleeping more than the recommended amount but are tossing and turning. Many adults have sleep apnea that is not diagnosed or being treated. If you struggle to get quality sleep, talk to your doctor about a referral for a sleep study.
- Hearing aids: Hearing loss is a major risk factor for cognitive decline. It can be helpful to have your hearing evaluated and get hearing aids if needed.
7. Consider participating in a research study.
Healthy volunteers and people living with early stages of Alzheimer’s disease are needed to advance the study of treatments, including medications such as aducanumab. To participate as an Alzheimer’s patient, you must have a diagnosis of Alzheimer’s specifically, not just dementia. Talk to your doctor about studies you could join.
People in North Carolina can sign up for trials at the NC Registry for Brain Health. The National Institutes of Health awarded an Alzheimer’s Disease Research Center designation to the joint UNC-Duke program in summer 2021, which will bring more research opportunities to people living in North Carolina.
Talk to your doctor if you are concerned about the signs of dementia in yourself or a loved one.