Alzheimer's Thriver
Send us Fan Mail [https://www.buzzsprout.com/2489345/fan_mail/new] “Afraid to Share the Diagnosis? How Janna Told Her Family and Took Back Her Voice” Not sure when or how to tell loved ones about an Alzheimer’s diagnosis? You’re not alone. The early stage is often filled with confusion, self-doubt, and fear of being treated differently. But hiding it only makes things harder. In this powerful episode, Janna shares how she broke the news to her sons and grandkids, and the surprising freedom that came with naming the diagnosis out loud. You’ll also hear the simple communication shift that helps her stay present and engaged in fast-paced conversations, even with memory challenges. You’ll discover: * Why telling others isn’t just about informing ...it’s about reclaiming power. What to consider before speaking with children or grandchildren * The gentle language Janna uses when she doesn’t want to say “Alzheimer’s” * A unique “echoing” technique that keeps her focused during conversations * How to advocate for your needs without shame or apology If you or someone you love is wrestling with how much to say—and when—this episode offers real-life wisdom from someone walking the journey with courage, humor, and grace. 1. European Geriatric Medicine (2021) “Family members’ attitudes towards telling the patient with Alzheimer’s disease their diagnosis: a 20year repeat study” * In Ireland, family members surveyed in 2021 were over 4× more likely to favor disclosing the diagnosis compared to two decades earlier Mayo Clinic Press+4SpringerLink+4PubMed+4 [https://link.springer.com/article/10.1007/s41999-021-00464-w?utm_source=chatgpt.com]. * The shift reflects broader recognition of patient autonomy, with disclosing seen as facilitating proactive planning rather than evoking negative reactions SpringerLink [https://link.springer.com/article/10.1007/s41999-021-00464-w?utm_source=chatgpt.com]. 2. Physicians Postgraduate Press (2019) “Disclosure of Alzheimer’s Disease and Dementia: Patient and Care PartnerCentric DecisionMaking and Communication” * This evidence-based consensus emphasizes that early and timely disclosure, paired with psychoeducation and care planning, improves quality of life, allows shared decision-making, and reduces harm by enabling earlier intervention PubMed [https://pubmed.ncbi.nlm.nih.gov/30900850/?utm_source=chatgpt.com]. 3. Alzheimer’s & Dementia Translational Research & Clinical Interventions (2024) “Personal value of Alzheimer’s disease biomarker testing and result disclosure from the patient and care partner perspective” * Disclosure of biomarker results (e.g. CSF/amyloid tests) provided diagnostic clarity, reduced anxiety, and motivated lifestyle changes and future planning, both for patients and care partners Verywell Health+12Alzheimer's Journals+12PubMed+12 [https://alz-journals.onlinelibrary.wiley.com/doi/full/10.1002/trc2.12463?utm_source=chatgpt.com]. * Some noted that patients hesitated to share to avoid burdening others, but families often appreciated the information and wanted to support planning PMC+3Alzheimer's Journals+3PMC+3 [https://alz-journals.onlinelibrary.wiley.com/doi/full/10.1002/trc2.12463?utm_source=chatgpt.com]. Be sure to go to our website at alzheimersthriver.org [https://www.alzheimersthriver.org] to learn more about Larry and Janna's adventures.
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