You’ve Been Diagnosed with a Dementia-Related Illness, Now What?
If you’ve just been diagnosed with Alzheimer’s disease or another dementia-related illness, you will understandably be experiencing a variety of feelings. These feelings could range anywhere from shock and sadness, to anger and hopelessness, fear and anxiety, and many more. Initially, it may be a good idea to give yourself some time to adjust to what a dementia diagnosis means for you. You may also find it helpful to talk to your physician or a mental health counselor and to share your feelings with family and friends. Building a support system early on can help you as the disease progresses. When you feel ready, it’s a good idea to create an action plan for the future while you’re still able to express yourself and communicate your wishes. While Alzheimer’s disease and other dementia-related illnesses do not yet have a cure, there are many things you can do to maintain your quality of life and live your life with intention.
Susanne Bengtsson, Oceana Program Director, has helped hundreds of families navigate the complex emotions and myriad of steps that need to be taken when receiving a dementia diagnosis. Based on her years of experience working with families, she has some general advice she often shares.
How to Live with Dementia
If possible, talk to family and friends about how you’re feeling. Talking about your health situation is often the first step towards acceptance. It can also help other people understand what you’re going through and how they can help you. Making an appointment to consult with a specialist such as your primary care physician or a counselor for mental health support is wise. Bringing a family member with you as an advocate is equally important as they can take notes while you digest the information. Coping with dementia may be a lot to take in on your own at one time.
It can be helpful to learn more about your diagnosis and what to expect. You can start by asking your physician questions about the disease and about any symptoms you are experiencing or any concerns you are having. Educating yourself can make planning for the future easier. You may want to do this right away, or you may not be ready yet—you have control over your pace. Many organizations such as the Alzheimer’s Association and the Alzheimer’s Foundation of America offer education and support.
Choose Your Team
Think about which professionals you want on your care team—this can include a primary care physician, a neurologist, counselors, and other healthcare professionals. You may also want to familiarize yourself with services such as adult day programs, home care, and long-term care. While you may not need these resources at the present moment, it is important to work with your team and caregivers to plan for the future should your needs to change.
Take Stock of Your Finances
Take some time to ensure your affairs are in order and that all your essential documents can be easily found. This includes details of your bank accounts, tax documents, benefits and pension, as well as mortgage or lease documents, insurance policies, and your will. Connect with a representative from your health insurance carrier to learn what services are covered and what is not. If you have a long-term care insurance policy, review it to understand your coverage. Also, connect with a benefits counselor in your area to learn what assistances you can be entitled to. You may also want to speak with a financial advisor.
Advance Care Planning
You may also want to start thinking about, discussing, and recording your wishes concerning your future care before you are no longer able to make these decisions for yourself. Reach out to your support team to help you make these advance care plans. Support could come from family, friends, care partners, elder care attorneys, and medical professionals. Most importantly, it’s best not to assume that people already know about advance care planning and your wishes. Give yourself time to work through this process. It can be emotionally charged and thought-provoking. It is unlikely that a one-off conversation or meeting will cover everything. Also, remember that it is okay to change your mind and adjust as you discuss further.
There are three parts to advance care planning:
- Making statements about future needs and wishes
- Making care decisions in advance about treatment or refusal of treatment
- Naming a power of attorney to assist in ensuring your wishes are met, among other things
As you progress with a dementia-related illness, like Alzheimer’s disease, you might want to consider whether it’s still safe to continue to drive. This is something you can discuss with your medical providers and family. Some organizations offer professional driving evaluations, including the AARP and AAA. Driving is a complex task that requires the use of various skills, including navigation, spatial awareness, and speed of reaction. These skills can be affected by dementia-related illnesses depending on the type of dementia someone has and the part of the brain that is affected. This can be a challenging conversation to have as driving offers independence and autonomy. Make sure you have tools and resources on hand and prepare for this conversation to best assist you in keeping the person and the community safe.
Take Care of Your Health
Maintaining a healthy lifestyle can make living with dementia much more feasible for you. It’s beneficial to work with your healthcare providers to explore what this could look like for you. This may include but is not limited to:
- Receive regular checkups and talk to your physician if your mood is low or you feel depressed.
- Eat a healthy and balanced diet. A diet rich in vegetables, olive oil, whole grains, and fish such as the Mediterranean diet is recommended.
- Exercise regularly. Exercises such as walking every day, gardening, or using a stationary bike are manageable and beneficial.
- Get plenty of sleep. Listen to your body! Rest when you are tired and maintain good sleep patterns.
- Be mindful of your alcohol intake.
- Quit smoking.
- Do not change medications or dosages without first checking with your doctor.
- Socialize. Continue to get together with friends and keep up with your interests and hobbies.
Create Your Life Story
If you haven’t already done so, you may want to think about documenting your life story. There are many different formats to choose from ranging from books to videos to downloadable apps. Our life experiences shape us as individuals, and knowing them helps others understand who we are as people. People living with dementia often experience problems with communication and memory loss, which in turn can lead to difficulties communicating important aspects of who they are, such as their background, interests, and who and what is important to them. A life story acts as a record of this information and can be shared with others to help them better understand and relate to the person with dementia.
How We Can Help at Inspῑr
Receiving a diagnosis of Alzheimer’s disease or another dementia-related illness can be challenging. Many details should be considered to ensure that you and those around you are as prepared as possible to assist with the progressive condition. At Inspīr Carnegie Hill, our dementia experts, clinicians, and social workers are here to offer resources, guidance, and support.
For initial help, we encourage you to download our complimentary Guide to Navigating Dementia Diagnosis. Additionally, reach out to us to tour our residence and speak with our Integrated Care Team. We are here to help guide you through the process and work with you to find manageable solutions.
Our recent blog post, Care in a New Way with Oceana Memory Care, provides additional insights into our innovative approach to supporting residents with memory care needs. If you are interested in scheduling a time to speak with one of our experts, please contact us to learn more!