Monica Moreno
Monica Moreno, senior director for care and support at the Alzheimer’s Association in Chicago, where she works with families after an Alzheimer’s disease diagnosis. Alz.org
Alzheimer’s disease is life-altering and frightening not just for the person receiving the diagnosis but also for his/her family. When you or a loved one hear this diagnosis, you likely will think of the end—or final—stages of this disease. However, diagnosed individuals can continue to live meaningful and productive lives in the early stages.
The first step is to understand and accept the diagnosis. That starts with getting educated about the stages…how the disease will progress…and what treatments and services are available today and in the future so that you can be prepared. There is a lot of information available…in fact, so much that it can be overwhelming. Take your time and go at your own pace. Alzheimer’s is a journey, not a sprint.
Most important: You do not have to go through this alone. Once you reach out and get support, you will feel some relief and less isolated.
Each person’s progression is different, but there are changes that characterize each stage and things you can do to prepare for the next stage…
What to expect: In the early stage, people often still are independent and able to drive and can continue to enjoy being social, though they might have a hard time planning and organizing tasks.
Symptoms: Mild memory issues, including struggling to find the right word when speaking…forgetting words or something you just read or heard, perhaps the name of someone you just met. You may start to lose things. Loved ones may notice these problems, but they might not be obvious to the outside world.
Steps to take…
Take care of yourself. Many people who are newly diagnosed take the opportunity to look at their lifestyle and make changes that will enable them to live their healthiest life. Adopting lifestyle changes, including controlling blood pressure, healthy eating, exercising and staying socially and intellectually engaged, may help slow cognitive decline and preserve existing cognitive function longer.
Discuss medications. Early detection gives you the chance to start taking medications that might help now. It also provides an opportunity to enroll in a clinical trial exploring new medications and treatments. Talk to your doctor.
Prioritize what matters to you. In the wake of a diagnosis, many people choose to spend time doing meaningful activities and spending more time with the most important people in their lives.
Build your support team. This is a good time to start building the right support team so that you’ll have people to rely on as the disease progresses. This also is important for the spouse or care partner, whose support needs will grow as well. One option: Connect with others who are living with Alzheimer’s or other caregivers by joining an Alzheimer’s Association support group (see below for suggestions). Being able to share your experiences with others living your journey can be helpful.
Take practical steps to prepare. Put legal and financial documents and end-of-life plans in place. Doing so now allows the person with Alzheimer’s to be part of the conversation and share his/her wishes with family and friends. Later on, family members will have peace of mind knowing that they’re following their loved one’s wishes.
Put safety measures in place. Most people want to stay in their home as long as possible, so creating a safe environment is critical. Remove tripping hazards such as throw rugs, and secure bookshelves and other heavy furniture to prevent them from tipping over. Other steps become more important when Alzheimer’s worsens and affects judgment—securing hazardous items, such as medication, liquor, sharp objects and cleaning products, from easy access…putting stickers on glass doors to prevent walking into them…and securing exterior doors or installing motion detectors to prevent wandering from the home. Remove locks on bathrooms and bedrooms so the person cannot lock himself in accidently. When to take these actions will depend on Alzheimer’s progression.
Consider when to stop driving. This is a very difficult and complicated decision. The Alzheimer’s Association offers online tools to help families discuss this sensitive topic, including signs of unsafe driving and transportation alternatives.
What to expect: This often is the longest stage—it can last for many years, and the person living with dementia can require more and more care as damage to nerve cells in the brain increases. Dementia symptoms become more pronounced, and loved ones may see clear personality and behavior changes.
Symptoms: Worsening language and cognitive problems, forgetting basic personal information and not knowing what day it is…difficulty doing—or even refusing to do—everyday activities such as bathing or needing help with those tasks…and emotional issues that manifest as anger and frustration and refusal to participate in social situations. Wandering and getting lost—either on foot, by car or on public transportation—may become a problem and pose a threat to safety.
Also: The person may become increasingly suspicious, have delusions or engage in repetitive compulsive behaviors. Physical changes can include sleep problems, such as nighttime restlessness and daytime sleepiness, and difficulty with continence.
Steps to take…
Consider additional help. As care needs increase, families may consider adult-day-care centers, aides and other outside support. These resources not only provide additional assistance but also offer caregivers a break to attend to their personal care and well-being.
Adapt your communication. As the disease progresses, and communication becomes more challenging, adapt your communication. This may include slowing down and making eye contact with the person as you speak…and using short, simple sentences. Ask one question at a time, rather than overwhelming the patient with a series of questions. Give him time to process and respond before continuing the conversation.
What to expect: This is the most difficult stage, with profound changes, such as loss of speech and movement and the inability to walk and swallow. General health worsens with an increased risk for infection, especially pneumonia. Significant personality changes may take place, and there may be little awareness of recent experiences or one’s surroundings. But the person living with Alzheimer’s still can benefit from some types of interaction and may be soothed by relaxing music or a gentle touch.
Steps to take: Around-the-clock assistance for daily personal care usually is needed. Families may consider nursing homes or other long-term-care options. Hospice care may be available for individuals nearing the end of life. See the box on page four for resources that can provide help.
