Coping With Alzheimer's Disease

If you or your loved one are one of the estimated 5.2 million people in the United States living with Alzheimer's disease or another form of dementia, take heart. Although adjusting to a life-changing diagnosis such as Alzheimer's can be very difficult, it's important to know that there are things you can do to make a difference in how you experience and cope with this health challenge.

Start by considering these different aspects of adjusting to and living as well as possible with Alzheimer's disease.

Emotional

You may be tempted to ignore this aspect and jump right to considering which treatments should be pursued, but paying attention to your emotions is important. Coping with this diagnosis and its symptoms can be stressful, so give yourself time and grace to process this information and adjust to this new challenge. This applies to you whether you yourself have the disease or it's affecting someone you love.

Acknowledge and identify your emotions, and understand that a range of feelings can be a normal reaction to this diagnosis. These can include:

• Shock and disbelief: "I can't believe this is happening. I just want to wake up and find out that this was a bad dream. It doesn't even seem real."
• Denial: "There's no way that this is correct. Sure, I've had a few memory problems lately, but I'm just not sleeping well. The doctor didn't even ask very many questions. I don't think anybody could have passed that test he gave me." 
• Anger: "I can't believe this is happening! Why me? It's so unfair. I've worked hard my whole life and now this? I should never have agreed to go the doctor."
• Grief and depression: "I'm so sad. Is life as I know it forever changed? How can I tell my family? I don't know how to live with this knowledge. I don't know what to do, but I'm just so sad."
• Fear: "Will I forget my loved ones? Will they forget me? What if I can't live at home anymore? Who will help me? I'm afraid, both of not knowing and knowing what the future with this disease looks like."
• Relief: "I knew something was wrong. I wanted to believe it wasn't a problem, but in a way, I'm glad to be able to name it and know that I wasn't just exaggerating my problems. At least now, I know what's happening and why it is."

You may experience all of these emotions or just some of them. There's no right or expected order of emotions, and you might also circle back to certain ones more frequently than others.

The same can be said for those who are working to make sense of someone else's diagnosis and what it means for them as a loved one and/or caregiver.

Strategies for Emotional Health

Eventually, you will hopefully be able to experience a level of acceptance of your dementia diagnosis where you are able to acknowledge it and be able to focus on strategies to help you live each day fully.

Journaling

You may find it helpful to use a journal to write about your thoughts and feelings. This is a place where you can say or write anything you feel or think without fear of judgment or upsetting others. 

Support

Continue to spend time with family and friends. It can be tempting to stay home and isolate yourself, but social interaction and the support from loved ones are important for your health. Share your diagnosis and explain Alzheimer's symptoms to close family and friends.

If you're experiencing depression, anxiety, or other emotional distress, meet with a mental health professional, such as a psychiatrist, social worker, psychologist, or counselor for assistance. They can help by listening, helping you express your feelings, diagnose potentially treatable psychiatric conditions and outlining ways to cope more effectively.

Gather Knowledge

Learn about Alzheimer's disease (or other kinds of dementia) and what to expect as the disease progresses. Understanding the symptoms and treatments of Alzheimer's disease can help you and your loved ones cope in a more positive way. While knowledge doesn't change the symptoms, it's often helpful because it can help you better anticipate certain bumps in the road along the way.

Sometimes, after the news of the diagnosis sets in, you may find that you have several more questions. It's important to ask questions and get all of the information you can. You might find it helpful to bring a list of questions along to your next visit.

Make Plans

Consider future options for care by checking out your community resources and services. Identify what your options and preferences are for in-home care, assisted living, and long-term care/nursing homes ahead of time, rather than during a possible crisis. Among the benefits of this are an added sense of security and confidence.

Physical

While it's your brain that has Alzheimer's (or another kind of dementia), paying attention to your whole body is important. For example, be sure to get your vision and hearing checked routinely since deficits in these areas can cause, or increase, confusion. Or, if your knee or back is constantly aching, ask your healthcare provider what can be done to help decrease that discomfort. Don't neglect other areas of your health.

Physical exercise has been associated with improved cognition in persons with and without dementia. Keeping physically active may help improve your functioning for a time, and it can also protect against depression. 

In addition to exercising regularly, pay attention to good nutrition. Certain foods have been tied to better cognitive functioning, so ensuring a healthy diet is important. Sometimes making or scheduling meals is a struggle, so consider using a service like Meals on Wheels. Many communities have meals and delivery available.

Finally, keep mentally active. Try to stretch your mind by doing mental gymnastics such as crossword, Sudoku, or jigsaw puzzles, or other mental exercises.

Social

Remain active and engaged with the world around you. As much as possible, don't give up your hobbies, interests, or social outings.

Family Adjustment

A new diagnosis of Alzheimer's or another kind of dementia can have ripple effects on family members. While some may have suspected this diagnosis, others may be completed surprised when they get the news.

As you come to adjust to living with Alzheimer's, you or one of your family members may want to take the time to provide some education to the rest of the family about what Alzheimer's disease is, what it's typical symptoms are, what they can do to help, and what they can expect as the disease progresses.

Some families will call a meeting where everyone can gather together and learn about dementia, while others may find it easier to share a few online articles with each other. How the conversations are accomplished is not nearly as important as that they actually occur. Family members usually are more likely to be on the same page and less apt to become frustrated with each other when they have similar understandings of dementia and its symptoms. Getting them to this place also breeds the best situation for lending support.

Support Groups

You may find it helpful to join a support group, either in your local community or online. There are groups that are designed for those who are newly diagnosed, those who are coping with younger onset (early-onset) Alzheimer's, and those who are caregivers.

You can search for a support group in your area on the Alzheimer's Association's website.

Holistic and Spiritual Care

Don't forget your spiritual health. Pray, meditate, or read faith-based books if it is your practice. If you are part of an organized group, seek their support as well.

Combating Stigma

Alzheimer's is a health condition that has the potential for carrying a stigma, and this can be frustrating and isolating. Many people may have heard of dementia but might not really understand it. It may be helpful for you to learn more about some of the misperceptions people have about Alzheimer's and how to overcome them.

Seeking Quality of Life

Many individuals continue to enjoy some of the same activities and social interaction as they did prior to their diagnosis. Seeking quality of life doesn't mean that you should ignore or gloss over the fact that Alzheimer's is a difficult disease. Instead, it means finding a way to cope with the diagnosis and plan for the future, which can make all the difference to you and your loved ones.

Practical

You can use strategies for maintaining independence that will help your memory and confidence.

Try Memory Tips

Use memory aids to help you keep track of things. Mnemonic devices, which are proven strategies to help you learn and remember information, have been shown to be effective even in people who have dementia.

Consider using some of these simple strategies:

• Outline a schedule for the day.
• Write down names or special events.
• Jot down phone calls that were made or received in a notebook or in a notes app on your cell phone.
• Label cupboards and drawers to help locate items.
• Keep a list of important phone numbers handy.

Set Routines

Routines can also be very helpful. In fact, some research has shown that establishing daily routines may be able to help you be independent for a longer period of time.

Ensure Home Safety

Most people who are living with dementia want to live at home for as long as possible, so learning about different ways to remain safe and function well can be very helpful.

For example, if new medications and different doses become hard to keep straight, use a pill box marked with days and general times to organize and track medications.

Ask for Help

You may need to ask for help at times. This can be difficult, especially if you're one of those people who has always been the one to provide help for others. Keep in mind, however, that asking for and receiving help can help you be more independent for a longer time. Asking for assistance is also beneficial for others who want to be helpful but might not know how. 

Focus on Your Abilities

Recognize that although you may have to slow down with tasks and you may have days that are better than others, you still have much to offer. Focus on the many things you remain able to do, as opposed to the tasks that are more difficult for you to accomplish.

Get Legal Affairs in Order

Designate someone to serve as your power of attorney for healthcare (sometimes referred to as a patient advocate) and as your financial power of attorney. Formalizing this with the appropriate documents gives those you select the legal power to carry out your desires if you are unable to do so.

You may also want to complete a living will to help your patient advocate know what your preferences are regarding healthcare decisions.

Research Costs, Assess Finances

Additionally, you'll want to research the cost of different caregiver and facility options in your community. You may or may not need outside help, but taking this step will make it clear which options are financially feasible and which are not. If necessary, find out how Medicaid works. Medicaid offers a variety of covered services, both in-home and in facilities, to those who qualify.