Early Stage Dementia

Finding out early and getting the right diagnosis gives you more treatment options, opportunity to slow progression and manage symptoms.

• Make regular appointments with your primary care provider and/or specialists (e.g. neurologist, geriatrician, psychiatrist).
• If you need help finding a provider, click here.
• Your health care provider can track any changes in memory and thinking. They can also address any other health concerns that you may have.
• Taking care of your body can help your brain function as strong as possible. Healthy habits—like regular exercise, eating well, staying social, and keeping your mind engaged—can make a positive difference in how you feel and function each day.

Although there is currently no cure for dementia, there are disease-modifying treatments in clinical trials that may help slow its progression. Talk to your healthcare provider to learn more.

• 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 and mild cognitive impairment (MCI). 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:
  • The Queen’s Medical Center Brain and Memory Center
    • Queen’s Neuroscience Institute 
      • Neurology Clinic – Punchbowl: 808-691-8866
      • Neurology Clinic – West O‘ahu: 808-691-3135
    • Queen’s Geriatric Services 
      • Geriatric Clinic – Punchbowl: 808-691-8877
      • Molokai General Hospital: 808-553-3121
  • Hawaii Pacific Neuroscience, Memory Disorders Center – (808) 261-4476
    • Hawaii Pacific Neuroscience can offer free blood biomarkers screening for Alzheimer’s disease for people age 50-90 years old with memory loss concerns. They can also offer free travel assistance for patients from the neighbor islands participating in clinical trials for various treatments
  • Hawai‘i Pacific Health, Pali Momi’s Neurology Clinic – Phone: (808) 485-4250

Planning ahead when living with dementia is about empowering your choice and making decisions about your life in advance. This helps make things clear for those supporting you in your journey. It can be difficult, but it is good to plan ahead if you are able, as soon as you can. After you’ve had time to adjust to your diagnosis, here’s some next steps to take: 

• Talk story with people who you trust and who support you. They may be your ‘ohana, your family members, your chosen family, close friends, and care team. Talk with them about what is most important to you and how you want to live. As an ‘ohana, talk about dementia and work together to plan for the future to ensure that you can continue to live well with dementia. It may take time for family and friends to accept and understand, but it’s important to not go through this alone. If you’re the caregiver, bringing together the ‘ohana may help them know how to support you too, so that you don’t have to carry all the care responsibilities on your own. Every family is different. 
• An important first step is completing an Advance Healthcare Directive, which identifies who you trust to help with your health care decisions and what kind of care you would want. This can only be done while you have the capacity to do so. You may also consider completing a legal financial power of attorney document and a Providers Orders for Life Sustaining Treatment form. Click here visit Kokua Mau’s website to learn more.
  • The Conversation Project Kit 
• It takes a village.
  • When you talk story with your ‘ohana about your diagnosis, it can be helpful to talk through different roles. Everyone will have different understandings of dementia and different capacities to help. This will often change throughout the journey. Perhaps one family member or friend can assist with the day to day tasks, while another family member helps to manage the finances. Talking about it can help everyone to feel better and have clearer expectations. If you’re living alone, perhaps a trusted neighbor can check in on you often to see that you’re safe. Local social service organizations have programs that can provide support, case management, and guidance.  
• Consider the different care options and resources in the community. 
  • There’s care at home, care at a center during the day time, 24/7 care at residential care homes or foster homes and 24/7 care at nursing facilities. Everyone is different and everyone’s experience living with dementia is different. However, it can be helpful to consider the types of care you would be open to receiving if it could benefit your safety and quality of life. It’s also helpful to think about the types of care that your finances can afford and whether to prepare to apply for government assistance in the future. If you’re able, it’s helpful to talk with your ‘ohana about this in advance so that they know how to support you and honor your wishes. 

The Advance Health Care Directive is an important advance care planning document. This is a written statement about the type of care you want and the people you trust to help you with health care decisions, if you can no longer speak for yourself. It is a gift to family and friends so that they won’t have to guess what your wishes are. It empowers your choice. 

Everyone age 18 years or older should have an Advance Health Care Directive. It is especially important for people with Mild Cognitive Impairment, early-stage dementia, or any illness to complete an Advance Health Care Directive as soon as possible. An Advance Health Care Directive can only be completed while the person has capacity to make decisions about their care. The Advance Health Care Directive can be made official by having a notary or two witnesses sign with you. Visit Kokua Mau – Advance Directives to download an Advance Directive with instructions and view frequently asked questions. 

Here’s a couple of resources to learn more:

• Hawaii News Now Video: Advance care planning with Kristin Lambert Bryant, Attorney at Law 
• The Essential Elder Law Hawaiʻi Handbook

It is also important to consider working with professionals to complete a Providers Orders for Life Sustaining Treatment (POLST) form and a durable Power of Attorney. 

A POLST form can be completed with a health care professional. “POLST is a form that contains medical orders that specify the type of care you would like in the event of a medical emergency. This form can be quickly understood by all healthcare professionals, including first responders and ambulance personnel,” (Kokua Mau). Click here to learn more.  

One should seek competent legal advice to draft a Power of Attorney for financial decisions. This is a legal document that designates an agent, usually a trusted family member or friend, to assist you with managing property or business affairs if one day you do not have the capacity to do so. A caregiver will need this Power of Attorney in order to assist with paying bills and managing the funds.

Learn more: 

• Legal Aid Society of Hawaiʻi 
  • Call: 808-536-4302 (OʻAHU) or 1-800-499-4302 (NEIGHBOR ISLANDS)
  • Main website: https://www.legalaidhawaii.org/ 
• Hawai‘i State Bar Association
  • For attorney referrals and more information, contact the Lawyer Referral & Information Service office at (808) 537-9140  or by email at LRIS@hsba.org. 
  • Website: https://hsba.org/

Free Legal line: Volunteer attorneys host a telephone hotline every Wednesday evening from the hours of 6:00 p.m. – 7:00 p.m. only to provide free legal information to the public. Call (808) 537-1868. This one-hour weekly program assists members of the public who may not have access to an attorney and need general advice or who just want to be pointed in the right direction to get information.

When living with Mild Cognitive Impairment, forgetfulness may make it difficult to keep track of monthly bills and manage expenses. Here’s some tips: 

• Consider ways to make it easier to manage your money and invite a trusted person to be your back-up. 
• Gather your important documents, whether hard copies or electronically, in a safe place known only to trusted persons close to you. These are things like info on your bank accounts, insurance, taxes, etc. 
• Remembering a PIN number may become difficult, and so using contactless credit cards for tap-to-pay can be helpful. 
• It might be helpful to set up limits on debit or credit cards. This can help to protect your funds, especially if you tend to misplace things often. 
• If you have someone close to you who you can trust to help manage your finances, it can be helpful to add them as an Authorized User to your accounts. This may also allow them to help make payments for you, without transferring financial responsibility or opening a joint bank account. 
• 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. Click here for a sample and talk with an attorney on next steps. 
• Consider financial planning and looking at your savings, investments, retirement plan, and long-term care insurance. These will be important financial resources to pay for care in the future. 
• Learn more: https://www.alzheimers.gov/life-with-dementia/planning-after-diagnosis

• Click here for a Home Safety Checklist PDF from the Alzheimer’s Association.
• Place signs or labels around your house as reminders. For example: Labels or photos on drawers with their contents, Reminders to turn off the water faucet and to turn off the stove.
• Consider signing up for an emergency alert response system like Life Alert or Kupuna Monitoring Systems. They have wearable devices like watches or necklaces. This will help you call for help in an emergency in case you cannot reach your phone. Some devices also have fall detection and GPS in case you get lost.
• Keep an extra set of house and car keys in case the originals are lost.
• Put emergency phone numbers and your address near all landline phones.
• Make sure smoke and carbon monoxide detectors are working in every room.
• Use appliances that have auto shut off features.
• Set the water heater to a lower temperature to avoid burns.
• Use a shower chair or bench to help prevent slips and falls in the bathroom.
• Reduce risk for falls:
  • Make sure your home is well-lit, especially in hallways and bathrooms.
  • Keep walking areas clear of clutter.
  • Make sure rugs are firmly attached to the floor, and avoid using small or loose rugs.
  • Put grab bars next to the toilet and in and around the shower for extra support.
  • Learn more about preventing falls at home. 

• 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.

• Staying active and social are key parts of maintaining quality of life and stimulating your mind. It’s important to focus on the things that you can do, rather than the things that you can’t. Every day is a new day. Talking with your ‘ohana and friends about doing these activities together can support you to continue living well. 
• Stay social. Communicating may become more difficult over time. Telling others what they can do to help can make it easier for them and you. It may be helpful to have conversations in more quiet environments with less distractions. It’s okay to ask people to repeat things and speak slower if it helps. 
• Exercise regularly. Moving our bodies can help to bring healthy blood flow to the brain and boost our mood as well. Whether it’s going for a walk, gardening, dancing, or another exercise you enjoy, it’s important to stay active if you can. Talk with your health care provider before starting a new exercise routine. Here’s a resource about staying physically active. 
• Eat a brain healthy diet. What we eat can fuel our bodies and our minds. It’s good to eat whole foods like vegetables, fruits, nuts, whole grains, fish and poultry. Emphasize nutrition, fiber, and healthy fats, such as avocados and olive oil. It’s also helpful to limit the ultra processed foods, sugary drinks, and fatty red meats. Talk with those supporting you about ways to incorporate more whole foods into your diet. Here’s a resource about healthy nutrition.
• Do what you love. As human beings, we need purpose in life and joy in our day to day. Sometimes dementia can make it difficult to do things we used to love doing. So it’s important to find new things to enjoy or adapt our activities so that we can continue to enjoy them in new ways. Whether it’s listening to music, baking with family, or being out in nature with friends, keep finding the joy in your life. This shifts our focus to the positive and to the strengths we still have. Find meaningful activities to do together with those close to you.
• Get good sleep. Our sleep may change as we age and when living with dementia. If you can, try to get 7-8 hours of sleep. When we sleep, it gives our bodies much needed rest and may help the brain clear some metabolic debris from the day. Talk with those supporting you about what helps you sleep well and what hurts your sleep. These may be daily habits, parts of your environment, aspects of your health, etc. It can be helpful to establish a routine that supports good sleep hygiene. 
• Get your hearing and vision checked regularly. Dementia can change the way our minds make sense of what we see and hear. We want to give our minds the best info possible, by wearing hearing aides if we need them or glasses if we need them. Call to schedule routine visits and set reminders to attend the appointment. It can be helpful to allow those supporting you to attend the appointments with you. 
• If you smoke, try to stop. If you drink alcohol, try to limit it to one drink a week or none at all. These substances can damage our brains. We want to give the brain the ability to function as best as it can for as long as it can, and so stopping habits that hurt the brain is important. Talk with those supporting you about a safety plan to support you in reducing use and quitting. 

You don’t have to go through this alone.
Connecting with others who are also living with early-stage dementia can make a big difference. A support group gives you a chance to share, listen, and feel understood. There are also groups for care partners and caregivers, so everyone can get the support they need.

Click here to find a group near you.

For the early-stage support group, call the Alzheimer’s Association 24/7 Helpline at 1-800-272-3900.

Dementia can make it hard for someone to recognize places and people they know. Wandering is when someone living with dementia gets lost and feels confused about where they are — This can happen at any stage. About 6 out of 10 people with dementia may wander at least once, and many do it more than once. Wandering can be dangerous and even life-threatening. It’s important to plan ahead and stay safe.

• 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. 
• Think about using GPS tracker functions on your smart phone or using devices with similar functions. Consider sharing your location with someone you trust.
• Include a note with your name, address, and emergency contact information in your wallet or on your person.
• Create a list of familiar places that you frequently visit and places that you feel safe at. This may be a friend’s house, your former home, past job, favorite restaurant, etc. Sometimes we tend to go back to these familiar places when we’re lost. Share this list with someone you trust.
• 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.

• 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.” 

Travel with a companion to help guide and keep you safe. Consider requesting TSA Cares Assistance. Click here to learn more.

It may be helpful to inform the TSA officer of your diagnosis so that they know will be more understanding, patient, and guide you during the screening process. Click here for the TSA Cares Notification Card for Individuals with Disabilities and Medical Conditions. Download and print this card. Fill in the blank and bring it with you when you travel.

• 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 

• 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. Here’s an online resource about living alone with early stage dementia.
• 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 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/