Coping and Living Well With an Alzheimer's or Dementia Diagnosis

annedde/E+/Getty Images

If you or your loved one are one of the estimated 5.2 million people in the United States living with Alzheimer's 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.  

So, what now? How do you live with Alzheimer's disease?

How do you cope with a diagnosis like dementia? What should you do? 

Start by considering these different aspects of adjusting to, and living well with, dementia.

Thoughts and Feelings About This Diagnosis

You may be tempted to ignore this aspect of your health and jump right to considering which treatments you should pursue, 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.

Acknowledge and identify your emotions, and understand that a range of feelings can be a normal reaction to this new diagnosis. Emotions and thoughts may 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 any more? Who will help me? I'm afraid—both of not knowing and knowing the future with this disease."
  • 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. 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.  

Strategies for Emotional Health

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.

 

Social 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. Don't be afraid to ask your loved ones for assistance. True friends will want to be involved and will feel comforted in knowing how to help you.

Counseling: If you're experiencing depression, anxiety, or other emotional distress, meet with a social worker, psychologist, or counselor for assistance. They can help by listening, helping you express your feelings, and outlining ways to cope more effectively.

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 these stigmas.

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 reduce unexpected bumps in the road along the way.

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 for loved ones. 

Holistic and Spiritual Care: Don't forget your spiritual health. Pray, meditate or read faith-based books as is your practice. If you are part of an organized group, seek their support.

Consider Treatment Options

Medications and Other Non-Drug Treatments: Find a good physician and discuss treatment options, which can include medications and non-drug approaches. There are some medications available that may slow the disease process. Additionally, several other non-medical strategies have been shown in research to be helpful in responding to the symptoms of Alzheimer's. 

Alternative and Complimentary Approaches: Always tell your physician if you're taking any other medications or herbal or natural supplements. Some people have reported that complimentary and alternative approaches to treating dementia have been helpful, but coordinating these efforts with your doctor is important to prevent drug interactions or other side-effects.

Ask Questions: 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.

Consider Future Options for Care: Check out your community resources and services. Identify what your options and preferences are for in-home careassisted living, and long term care / nursing homes ahead of time, rather than during a possible crisis.

Prioritize Overall Physical Health

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

Nutrition: 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 ordering a service like Meals on Wheels in your home. Many communities have meals and delivery available.

Treat the Whole Body: 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 doctor what can be done to help decrease that discomfort. Don't neglect other areas of your health.

Strategies for Independence:

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 by the phone.
  • Label cupboards or drawers to help locate items.
  • Keep a list of important phone numbers by the telephone.

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.

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.

Stay Active: Remain active and engaged, both physically and mentally. As much as possible, don't give up your hobbies, interests or social outings. Try to stretch your mind by doing mental gymnastics such as crossword, Sudoku or jigsaw puzzles, or other mental exercises.

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 the 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. 

Don''t Write Yourself Off: 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.

Legal and Financial Health Matters

Legal Documents: One way you can take control of your situation is by designating someone to serve as your power of attorney for healthcare (patient advocate) and as your financial power of attorney. These documents provide the legal power for other people to carry out your desires if you are unable to do so.

You may also want to complete a living will. Not all states recognize living wills as legal documents, but completing one can still help your patient advocate know in writing what your preferences are regarding healthcare decisions.

Research 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 finances are limited, find out how Medicaid works. Medicaid offers a variety of covered services, both in-home and in facilities, to those who qualify.

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 about a diagnosis of dementia.

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, how it's not infectious from one person to another, 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.

Seek Quality of Life While Coping With Dementia

As you cope with the challenge of Alzheimer's disease or another kind of dementia, it may be encouraging for you to know that people with dementia have been interviewed about what improves their quality of life. Their answers emphasized that quality of life is indeed possible for those living with dementia, and that many individuals continue to enjoy some of the same activities and enjoy social interaction as they did prior to their diagnosis.

Seeking quality of life doesn't mean that we should ignore or gloss over the fact that Alzheimer's is a difficult disease. That's just not helpful. It does mean, however, that there can be hope for you as you cope with dementia, and that there are some things you can do to enjoy life despite your diagnosis.  

You can't change the fact that you have Alzheimer's disease, but the way you cope with the diagnosis and plan for the future can make all the difference to you and your loved ones.

Sources:

Alzheimer's Association, Just Diagnosed. http://www.alz.org/i-have-alz/just-diagnosed.asp​

Alzheimer's Association. Tips for Daily Life. http://www.alz.org/i-have-alz/tips-for-daily-life.asp

Alzheimer's Society. Fact Sheet. After a Diagnosis. https://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1785

  • Up Next