We got a recent diagnosis. What now?

Receiving a diagnosis can be difficult and overwhelming. No one is prepared for life with dementia. There are lots of things that you can do to help you live well with dementia. Getting accurate information and support can empower you on this journey. Here’s a checklist to help you get started:

  • Learn about your diagnosis

    Being informed will help you know what to expect as the disease progresses. Here are some resources:

  • Get regular medical care

    Make regular appointments with your primary care provider or specialists (e.g. neurologist, geriatrician, psychiatrist).

    If you need help finding a provider, click here

  • Consider treatment options

    Traditionally, health care providers prescribed medicines that help to treat and manage the symptoms associated with dementia due to Alzheimer’s disease. Some common types are Memantine, Donepezil, Galantamine, and others.

    Now we have disease-modifying treatments (DMT) for early stage Alzheimer’s disease. These medicines don’t just help with symptoms—they try to slow down the disease itself. Right now, the most well-known DMTs are special medicines called monoclonal antibodies. They work by finding and clearing away amyloid-beta plaques, which are a hallmark of Alzheimer’s. Some examples of these medicines are Lecanemab and Donanemab. These medicines are currently delivered intravenously or through an IV at outpatient infusion centers at regular intervals (e.g. every 2 to 4 weeks). Some side effects may include amyloid-related imaging abnormalities (ARIA), infusion-related reactions, headaches and falls. Medicare can help to cover these treatments if the health care provider participates in a data registry.

    Here are a few clinics in Hawai‘i that offer these treatments:

  • Gather your support team

    It can be helpful to have support around you. Recognize that this support team could be professionals like your health care provider or case manager and can also be trusted friends and family members.

    Share your experience with your support team. It can be helpful to let them know about your diagnosis so that they know what to expect and how to support you. It can be difficult to share, but having support around you can make the biggest difference.

  • Connect with local services and support
    • Join a support group
    • Call the statewide Aging and Disability Resource Center to find options for services and supports.
      • Phone: (808) 643-ADRC (808-643-2372)
      • TTY: (808) 643-0889
    • If you have Med-QUEST or HMSA, your health insurance may be able to provide a health coordinator or service coordinator to help navigate local services and supports.

  • Do some legal, financial, and long-term care planning

    Complete an Advance Health Care Directive. Everyone age 18 years or older should have an Advance Health Care Directive, and it is especially important when living with dementia. This allows you to choose who you trust to help with your healthcare decisions and what kind of care you would want, if one day you’re unable to communicate that. Visit Kokua Mau to learn more.

    If you can, designate a financial power of attorney so that someone you trust can help manage your finances. Some may choose to do a Durable Power of Attorney and include both health care and financial power of attorney information. When living with dementia, forgetfulness may make it difficult to keep track of monthly bills and manage expenses. Click here for a sample and talk with an attorney on next steps.

    Plan ahead for care. This could be discussing the type of care you would want, at home or someplace else, and who you would want to provide that care, your family or professional caregivers. Planning ahead for care may also include financial planning such as savings, investments, and long-term care insurance.

  • Get help as needed with day to day tasks

    Automate your life as much as possible and allow others you trust to support you as well. This might look like using simple memory aids like a notepad or sticky notes to jot down reminders, setting up auto pay for your monthly bills, using a pillbox to keep medications organized, and a calendar to record appointments.

    Consider using technology solutions for daily reminders, medication reminders, safety (e.g. emergency response, door alarms), etc.

    Ask family members, friends, neighbors or local support services to help with routine tasks, such as cooking, transportation, grocery shopping, etc.

  • Be safe at home
    • Get home-safety tips.
    • Consider wearing a medical ID bracelet or necklace in case you get lost or need help, or joining the MedicAlert. Some families may also place identification and contact information in a wallet or sewn onto clothes.
    • Keep a current photo and description with family or friends so that they have it ready in case you get lost and they can file a missing person report. Here’s an AARP article with tips.
    • The State of Hawaiʻi Department of Law Enforcement is developing a Silver Alert program that will help save lives by alerting the community and helping to locate people who may wander off and go missing due to cognitive decline like dementia. More updates are coming soon.

  • Stay safe on the road
    • Talk with your doctor if you become confused, get lost, or need lots of help with directions, or if others worry about your driving.
    • Have a conversation about safe driving and living with dementia. Dementia & Driving | Alzheimer’s Association

  • Stay healthy
    • Be active! Getting exercise can help you feel better and keep your muscles, joints, and heart in good shape.
    • Eat a well-balanced diet that includes fruits, vegetables, and whole grains.
    • Continue to enjoy visits with family and friends. Continue to participate in your hobbies and find things that you enjoy doing.

  • Consider participating in a clinical trial

    • Hawaiʻi Pacific Neuroscience has a memory clinic and offers the latest research therapies at no cost to qualified patients as well as free interisland travel for neighbor island patients. They have many clinical trials. Visit their website to learn more: https://hawaiineuroscience.com/
    • CARE Research Registry invites Asian Americans, Native Hawaiians, and Pacific Islanders (AANHPI) to improve diverse representation in research and elevate culturally appropriate models of research and engagement. Click here to learn more and enroll in the registry today to receive a gift card.
    • Alzheimer’s Association has lots of info about clinical trials and TrialMatch® which is a free, easy-to-use service that helps you find clinical research that may be a good fit. “Without clinical trials, there can be no better treatments, no prevention and no cure for Alzheimer’s disease.”

  • If you live alone
    • Identify someone who can visit you regularly and be an emergency contact.
    • If you are at risk of falling, order an emergency response system like Life Alert. This is a special pendant or bracelet that lets you call for help if you fall and can’t reach the phone.
    • Stick with familiar places, people, and routines. Simplify your life.
    • Get tips about self-care, safety, staying connected, and more.
    • Join an online community like Living Alone and Connected! designed specifically for individuals living alone with dementia. This vibrant community offers: Resources & education, Meaningful social connections, Engaging content & events, and a safe, supportive environment.

  • If you are working
    • If you have problems performing your job, consider reducing your hours or switching to a less demanding position.
    • Consider consulting your employer’s Human Resources department or employee assistance program about reasonable accommodations, family leave, disability benefits, and other employee benefits.
    • Find out if you qualify for Social Security disability benefits.
      • Alzheimer’s disease dementia and Vascular dementia are listed under the Mental Disorder conditions that could be considered during a Disability Evaluation under Social Security. Parkinson’s Dementia, Frontotemporal Dementia, Lewy Body Dementia, and Mixed Dementias are listed under “Compassionate Allowances Conditions.”
      • Social Security Administration (SSA) uses the same rules to evaluate Compassionate Allowances conditions when evaluating both Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) programs. Learn more at www.ssa.gov/compassionateallowances Call 1-800-772-1213 or visit https://www.ssa.gov/

This checklist was adapted from the National Institute on Aging. 

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