Alzheimer’s disease is a brain condition that causes memory loss and confusion. It also affects your behavior.
While it commonly affects older adults above the age of 60, roughly 10% of all people with Alzheimer’s start to experience symptoms in their 30s or 40s, which is referred to as early-onset or young-onset Alzheimer’s disease.1
Alzheimer’s is a progressive, irreversible condition, which means it gets worse over time and cannot be cured. As it progresses, it can make daily living activities and interacting with others difficult. However, medication can help with the symptoms and slow down the disease’s progression.
“It can be difficult to cope with Alzheimer’s at any age, but particularly with early-onset because people understandably don’t expect it to happen so early,” says Richard Marottoli, MD, MPH, a physician at Yale Medicine who specializes in treating Alzheimer’s disease.
How to Cope With Your Emotions
Being diagnosed with early-onset Alzheimer’s disease can be distressing for you and your loved ones.
The key is to get help, first with the practical aspects, but also with the emotional aspects. Counseling can help you cope emotionally.— RICHARD MAROTTOLI, MD, MPH
Counseling can help with:
- Accepting the diagnosis: Being diagnosed with a terminal illness at an early age can cause you to experience a range of emotions, such as shock, numbness, anger, disbelief, grief, and fear. Counseling can help you cope with these emotions and accept the diagnosis.
- Planning for the future: It’s critical to plan for the later stages of the disease and beyond, and make arrangements. Counseling can provide the support you need while you get your affairs in order.
- Adjusting your expectations: Alzheimer’s disease can make it harder to do things that you were once able to do with ease. This can cause shame and embarrassment and you may find yourself hiding these incidents from loved ones. Counseling can help you adjust your expectations and focus on your abilities rather than your disabilities.
- Offering different perspectives: Alzheimer’s disease can alter your perception of yourself and your relationships with your loved ones. Counseling can provide different perspectives and help you maintain a positive outlook.
- Managing symptoms: Counseling can help manage some of the cognitive and behavioral symptoms of Alzheimer’s disease. You may also find complementary practices such as Tai chi and brain exercises such as puzzles helpful.
Counseling can also be helpful to your loved ones. “Early-onset Alzheimer’s can be hard on the patient, but particularly hard on the family–the partner may or may not be working and depending on how early the onset, there may be relatively young children, who may have a very difficult time adjusting,” says Marottoli.
How to Cope With Your Physical Health
Alzheimer’s disease causes your health to deteriorate. These are some strategies that can help you cope physically:
- Get regular health check-ups: Seeing your healthcare provider regularly to evaluate the progression of your condition, discuss your symptoms, adjust your medication, and check for other health conditions can help ensure that you’re getting the appropriate treatment.
- Get your flu shots: Alzheimer’s disease can make you more susceptible to pneumonia and the flu. Taking your flu shots regularly can help prevent you from falling ill.
- Take medication as prescribed: Taking your medication consistently and reporting any side effects to your healthcare provider can help you manage symptoms.
- Stay active: Marottoli recommends staying as socially engaged and physically and mentally active as possible.
- Follow a healthy lifestyle: Maintain a healthy lifestyle, exercise regularly, and follow a balanced, healthy diet such as the Mediterranean diet, says Marottoli.
- Take steps to prevent falls: Alzheimer’s disease can make you more prone to falling and injuring yourself. Clearing any clutter from the floor, avoiding loose clothing that can trip you up, wearing sturdy shoes, and leaving a light on at night can help prevent falls.
How to Maintain Social Relationships
It’s important to involve close family and friends in your journey, for emotional and practical support, but also to minimize social isolation and allow you to remain active and engaged, even if the nature of your participation in activities has to change over time, says Marottoli.
For instance, Marottoli says an avid tennis player may no longer be able to keep score, but may still enjoy playing without the element of scoring, or switching to a different activity like walking, if eye-hand coordination deteriorates over time.
Resources & Organizations
Marottoli lists organizations that can offer resources and support for people with early-onset Alzheimer’s:
- Alzheimer’s Association: The Alzheimer’s Association is an excellent resource to identify what’s available in your community. They also often have early-onset support groups, both for patients and families so that you can talk to other people undergoing similar things at a comparable stage in life. The other thing that’s important at any age, but particularly for early-onset, is to get financial and legal help with estate issues and determining how to access things like disability insurance or social security disability. The Alzheimer’s Association may be able to help with this too.
- School counseling services: If your children are still in school, their school may have counseling services and resources to help them deal with related issues.
- Local Alzheimer’s disease research centers: Because early-onset individuals often have fewer comorbid illnesses than late-onset individuals, it’s worth contacting a local Alzheimer’s disease research center or academic medical center to find out about clinical trials, as there are new treatment agents coming along.
Caring for Someone Who Has Alzheimer’s
If you are caring for a person with Alzheimer’s disease, here are some strategies that can be helpful:
- Set reminders: Alzheimer’s disease can make the person forgetful, so it can be helpful to set reminders on their phone for important tasks, like taking medication.
- Maintain a fixed routine: Sticking to a fixed daily routine can help the person know what to expect at each time of day and prevent confusion or anxiety.
- Budget plenty of time: As the condition progresses, daily tasks like showering, getting dressed, and eating can take longer, so it’s important to plan and keep plenty of time on hand.
- Offer reassurance: Make it a point to offer comfort and reassurance and let the person know you’re available to help.
- Speak simply: Speak to the person in words that are easy to understand and say or ask one thing at a time.
- Avoid arguing: Try not to argue or reason with the person and avoid showing them your anger or frustration. If you’re upset, leave the room for a few minutes to calm down, provided it’s safe to leave the person.
- Use distraction tactics: Use humor, singing, dancing, and music to distract the person.
- Ask for their help: Ask the person for help with simple tasks, like setting the table or folding clothes, to keep them involved and engaged.
- Focus on safety: The home environment and daily activities can be hazardous for people with Alzheimer’s. Ensure that all the windows are locked and sharp objects or dangerous items are kept out of reach.
- Look for other explanations for behavior: If the person is upset or aggravated, they may be upset about something else and unable to communicate it. Looking for other causes can help explain their behavior.
- Report symptoms to their healthcare provider: As Alzheimer’s progresses, the person may experience paranoia, mood swings, anger, and aggression. They may also bite or hit caregivers. Their healthcare provider may be able to prescribe medication that can help with these symptoms.
- Make the most of your time with them: If you’re caring for a loved one, enjoy your time with them and maintain a positive outlook.
In order to care for someone with Alzheimer’s, it’s important to take care of your own physical and emotional health, says Marottoli. He recommends being realistic about your own abilities and limitations and asking for help when you need it.