After an Alzheimer’s Diagnosis: Taking the Next Steps
Receiving the life-changing diagnosis of Alzheimer’s disease or another form of dementia can stop us in our tracks. There are difficult feelings to process, often overwhelming amounts of information, and the uncertainty of what the future will bring. If you or someone you love has recently been diagnosed with Alzheimer’s disease, we encourage you to browse through the article and resources below as you plan your next steps.
Get fully informed
Fully understanding your diagnosis can help lead to acceptance and confidence in living with it. While consulting with your doctor, it’s encouraged to proactively educate yourself with the help of trusted sources like Alzheimer’s Association, the National Institute on Aging, universities, and research hospitals. Along with learning the facts, it’s also important to understand the misconceptions and false assumptions about Alzheimer’s disease. And when it comes to medical details, know ahead of time that you may have to ask for clarification. It can be difficult to admit when some medical details are confusing, but everyone deserves to understand their state of health.
Communicate with loved ones
How and with whom you choose to share this diagnosis is, of course, your personal decision. It’s common to worry about what this means for your relationships and increased dependence on loved ones. But reaching out to loved ones as early as possible can help protect against the feelings of isolation, fear, and loss that can come with Alzheimer’s disease (and that can sometimes worsen symptoms). While these are difficult conversations, they can deepen trust, connection, and support, helping you feel more safe and secure in the midst of the diagnosis.
Since cognitive abilities can change with the length of a diagnosis, it’s also important to reach out while you can communicate clearly and on your terms. This can be a vital part of the acceptance process, and it will help you build a support network that you’ll need every step of the way. For help with these conversations, the University of Washington offers some writing prompts that can help you decide how and with whom to share your diagnosis.
Once you’ve shared your diagnosis, you can keep loved ones involved in creative ways outside of doctor’s visits and treatment updates. You can invite them to learn more about your diagnosis with you by going to an Alzheimer’s seminar, or you can make them a partner in your physical and mental activities. They’ll likely be grateful for the time with you and to be included on your journey.
Begin treatment and a care plan
There’s currently no cure for dementia, but there are treatments and lifestyles that, when started as early as possible, can slow down symptoms and improve quality of life. The multi-pronged approach could include prescription medications, supplement therapy, eating foods in the Mediterranean or MIND diet, and staying physically and mentally active. (It’s important to talk with your doctor or specialist about whether the prescription medications for each stage of Alzheimer’s would be right for you.)
In addition to treatment, it’s also important to create a proactive care plan with your doctor and loved ones. It can often be difficult for those with Alzheimer’s to ask for help or know what they need. A care plan will name caregivers and outline schedules for assistance with medications, transportation, daily living, and finances as your needs change and increase. It will also help with identifying when specialized memory care may be needed in the future. By accounting for your needs ahead of time, a care plan can help avoid confusion and frustration and provide peace of mind for you and your family.
Give yourself time to process
The many difficult emotions of Alzheimer’s disease include fear, anger, and grieving the changes in self-identity, relationships, and independence. While processing these emotions looks different for each person, it won’t happen overnight. These emotions may also trigger depression or anxiety, which are important to attend to immediately as they can sometimes exacerbate the symptoms of dementia.
Being gentle with yourself as you go through this transition will make all the difference in your acceptance and quality of life. Gentleness and self-care during this transition may look like spending extra time with family and friends, writing or drawing, or mental health therapy. It could also include spending more time outdoors, seeking spiritual guidance, eating healthy, and staying physically active to reduce stress and boost endorphins.
Seek and maintain support, connection, and community
While friends and family members can be strong and supportive, it can be difficult when they don’t have firsthand knowledge of what you’re going through. This is where support groups offer a critical source of solidarity and community that will help you feel connected and truly understood. You can easily find support groups through the Alzheimer’s Association’s local chapter in your area, their online community, and their 24/7 helpline. Support groups can also be found at churches or synagogues, memory care facilities, and through local universities. There are also plenty of groups for spouses and loved ones as well.
Staying active with loved ones and in your community will also help you protect against feelings of isolation and maintain your sense of normalcy and identity. Going to your regular fitness classes, enjoying movies and music, and joining in on local celebrations are all ways to help feel and stay connected.
Plan legal and financial affairs
Once you receive a diagnosis, it’s critical to update and finalize as soon as possible your legal, financial, and healthcare documents. The speed of Alzheimer’s progression can be unpredictable, and by putting your affairs in order while your symptoms are still mild, you’re ensuring you have full agency and control in your planning and in your legal and medical representation. This may include finalizing wills, trusts, power of attorney for both health and finances, elder law attorneys, and advance directives. If you would like to learn more about getting your affairs in order, you can watch a webinar we recently hosted, The Power of Planning.
Taking the time learn as much as you can about your Alzheimer’s disease diagnosis can help you feel more empowered as you work with your doctor and family on next steps. This Alzheimer’s Disease Resource Roundup can be a great place to begin your research, and you can find more information in our Brain and Memory Care Resource Center here.