I Have Alzheimer's, Now What? Coping with an Alzheimer's diagnosis
- shawneecanjura
- Jan 6
- 5 min read
If you've recently been diagnosed with Alzheimer's and are feeling lost and hopeless, read below for the 5 steps you can take to get back control of your future and feel open minded about what's to come.
Getting diagnosed with Alzheimer's is overwhelming and frightening. The key to coping with an Alzheimer's diagnosis is understanding that you still have worth and that you are still in control. Unfortunately, these are two points that are not usually covered by your diagnosing doctor. Lots of depressing images flash through your mind and confusing terms like 'Mild Cognitive Impairment' and 'Amyloid Plaques' tumble out of your doctor's mouth. They may give you a few pamphlets and 1-800 numbers for support groups and then they send you on your way with a very reassuring 'there is no cure and no timeline'. What they should say is 'Even though this is unwelcome news, you can adapt and if you take the right steps now, you can set yourself and your loved ones up for a truly happy and meaningful experience together'.
So that's what I'm here to do for you today, to tell you the truth: you can adapt to this, you can control this, and you can still lead a happy and meaningful life.
1. Establish a Support System
The single most important thing you can do to cope with your Alzheimer's diagnosis is bring in your support network right now, at the early stage. This network can include family and friends as well as professionals such as fiduciaries, clergy and doulas (like myself).
This helps in many ways:
Breaking down the feelings of embarrassment, shame and subsequent denial that come from the pointless stigma our society has attached to Alzheimer's.
Opening up lines of communication so that you learn to feel comfortable expressing your feelings and asking for help - sharing lightens the emotional load.
Taking control of your future by sharing your wishes before the cognitive impairment increases.
Protecting your loved ones from experiencing any hardships you might worry about by talking openly with them and collaborating on proactive measures to prevent them.
Enabling you to remain as independent for as long as possible by giving them the information they need to keep a loving, yet distant, watch over you.
2. Plan for the Future
Your future doesn't have to be an intimidating unknown. You are still in control and you can put your happiness on autopilot if you lay the proper groundwork now.
Don't want to live in an assisted living facility? Brainstorm alternatives with your support network and put the wheels in motion now to achieve your quality of care goals. Don't want your children's inheritance to be impacted by your care needs? Sit down with a financial planner and your trusted confidant to secure your assets and create an affordable long-term care plan.
Work with a trusted member(s) of your support network on the following:
Work with a doula to identify your needs and address your concerns so that you can make the most of your time with licensed professionals.
Select a people in your support network that you deeply trust to have access to your medical, financial and digital accounts (facebook, email, etc.) so that they can help you in urgent situations.
Consult with an attorney experienced in elder law and estate planning to discuss power of attorney, advance directives, trusts, wills, and ensuring your wishes are honored.
Work with a financial advisor and an accountant to update your financial plans, including insurance and long-term care options, to provide peace of mind.
Write down your wishes regarding care and living arrangements and share with family members, fostering understanding and support.
3. Reframe Your Thinking (This is potentially the hardest one of all)
Your life has worth even with this diagnosis! We are conditioned to think that we only have value if we are self-sufficient, capable, productive members of society. This mentality is wrong. There is value in every stage of life, it just changes. Once we can embrace that we can go from coping to embracing. You can still bring joy, laughter and love to the people in your life. You can still impart valuable lessons that your family, friends and society will benefit from. This includes teaching the adults to practice selflessness, compassion and resilience and the children watching and learning from their effort.
4. Work with a Professional Care Team
Putting together your professional care team now while you can still express your wish is essential. They will guide you and your support network along the best path to the goals you have established. Consider working with the following experts:
A Doula: Can help reframe your thinking, provide emotional support, preventative strategies and help you navigate the healthcare system.
Primary Physician: Can diagnose and monitor your cognitive function as well as ensure that you remain healthy and free of pain, extending how long you can live independently. Schedule regular appoints and appoint a member of your support network to attend with you.
A Memory Care Specialist: Can provide up-to-date care based on the latest research and options for people with dementia. They cannot replace the comprehensive care provided by your PCP. Work with your support network to research and schedule your appointments.
A Therapist: can help you unravel complicated emotions and provide a safe space to process your feelings and get closure in important relationships.
A Psychiatrist: Can provide additional support on your mood by prescribing medications if your PCP in unable.
An Accountant: Can keep your financial house in order so that increasing slips in memory don't cause serious damage to your financial welfare.
5. Practice Self Care
There is growing evidence that dementia progression can be slowed through healthy lifestyle choices. Not everyone see's value in committing to new habits but if you'd like to slow the progression, these are some of your best options:
There is no cure for dementia but new medications have been released that seem to slow the advance in some patients: Kisunla (donanemab), Lecanemab, Remternetug, and clinical trials of tau inhibitors. Ask your doctor if these may be good for you.
Eat healthy foods. Avoid sugars and carbohydrates.They are shown to cause inflammation in the brain which is currently believed to a strong contributor to dementia. Refraining from foods like bread, pasta and dessert can help preserve your current cognitive function.
Stop smoking and drinking. Both of these activities can cause dementia and worsen your symptoms.
Incorporate regular movement into your routine, as physical activity can positively impact brain health and delay the progression of dementia. Aim for 45 minutes a day of heart rate zone 2 activity, for example: a brisk walk around your neighborhood.
Coping with an Alzheimer's Diagnosis: Conclusion
An Alzheimer's diagnosis can feel like a death sentence but it's not. You still have value, you can still experience joy and you can still provide joy to those around you. It will be a difficult journey at first but if you take 5 crucial steps, you can navigate this journey with resilience and grace: Establish your Support Network, Plan for the Future, Cultivate Self Worth, Work with Professionals and Lead a Healthy Lifestyle.
About The Author:
Shawnee Canjura is the owner of The Dementia Doula, a coaching service for those with early stage dementia and their loved ones. She began this work after being the full-time, unpaid caregiver for her mother, who was diagnosed with Alzheimer's in 2016. What started out as the worst experience of her life eventually became the most positive and transformative experience of her life. She offers individual and group sessions to help clients get past the headaches and the heartaches of Alzheimer's care as quickly as possible, so they can experience the joyful and meaningful moments that this experience has to offer.
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