Late Stage Dementia

• 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 help to manage symptoms, make referrals for services, and address any other health concerns that you may have.

If your person completed an Advance Healthcare Directive and/or Power of Attorney document beforehand, it may be effective now. If it was not effective immediately, you may work with a health care provider to do a capacity assessment and write a letter about lack of capacity for decision making. Visit the Kokua Mau website or the University of Hawai’i Elder Law Program to learn more.

If they did not complete an Advance Healthcare Directive and/or Power of Attorney document beforehand, here are a few other options for someone to provide them assistance with decisions:

• Surrogate
  • A surrogate can either be designated by the patient or appointed by consensus of interested persons. Here is an example form: Declaration of Authority to Act as Surrogate for a Patient. This form can be completed by a health care provider who determines that the patient lacks capacity to make informed decisions about their health care. They may speak with “interested persons” (e.g. spouse, family members, close friend) to determine who would be the best surrogate to help make decisions based on the patient’s personal values. Health care systems may have their own versions of this Surrogate form.
• Supported Decision-Making
  • The Hawai’i State Legislature recently passed HB 320 Related to Supported Decision Making Agreements and it was signed by the Governor as an Act 284. Supported Decision-Making (SDM) is a way for people with disabilities, older adults, or those with mental health needs to make their own choices with help from people they trust. Instead of someone else making decisions for them, they get support to understand options and talk things through. The person still makes their own final decision. It’s like having a team to help, but they stay in charge. SDM is a safe and respectful way to support independence, while receiving support to make good decisions.
  • To learn more:
    • Supported Decision Making Resources by ACLU
    • Contact The Hawaii State Council on Developmental Disabilities (DD Council)
      • Main Office Phone: (808)586-8100
      • From the Neighbor Islands, call O‘ahu toll-free:
        Hawai‘i Island: (808) 798-1501
        Kaua‘i: (808) 274-3484
        Maui: (808) 984.2400, x68100
        Moloka‘i, Lāna‘i: (808) 468.4644, x68100
• Guardianship or Conservatorship
  • Guardianship or conservatorship is a lengthy, expensive legal process where a judge appoints someone to take care of the person and property of an individual who is determined to be incapable of handling personal affairs or property. Guardianship or conservatorship are the last options, only used when nothing else works and the person really can’t make their own decisions, even with help. This legal process could take money months. Read this chapter of The Essential Elder Law Handbook to learn more.

• Provider’s Orders for Life Sustaining Treatment (POLST) Form
  • A POLST form can be completed with a health care professional. The POLST form can be signed by the individual, by their Power of Attorney Agent or Surrogate. “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.

• Private Home care:
  Home care offers non-medical services such as cooking, cleaning, personal grooming, transportation, and companionship. It is usually paid for privately by the patient or covered through long-term care insurance.
  • List of Licensed Home Care Agencies – Department of Health
• Home health care:
  Home health care offers both home care and medical services to patients. These services include medication management, wound care, pain management, and more. To qualify for home health care, patients must meet specific eligibility criteria, and the services are typically covered by Medicaid, Medicare, and most private insurance plans.
  • List of Licensed Home Health Agencies – Department of Health
• Adult Day Health Care:
  Adult day health care offers support, companionship, personal care and medication management for adults who need supervision during the day. These programs give family members and caregivers respite, giving them the chance to work, take care of errands, or rest. Adult day health care services usually paid for privately or with long-term care insurance, but it can be partially covered by Medicaid Home and Community-Based Services or Kupuna Care program through the Aging and Disability Resource Centers.
  • List of Licensed Adult Day Health Centers – Department of Health
• There are many different kinds of placement options, such as Assisted Living Facilities, Adult Residential Care Homes, Community Care Foster Family Homes, Intermediate Care Facilities and Skilled Nursing Facilities. Main things to consider when selecting placement options are level of care, setting preferences, and finances. It can also be helpful to look for care homes or facilities with a specialty in memory care.
• CareSift offers a free service to patients and families by providing real, caring, local experts to assist with finding care that meets your needs. Contact them for a free consultation at (808) 400-9922, email info@caresift.com, or visit the website https://caresift.com/.
• Kupuna Care Pair has a map and searchable listing of care homes, foster homes, and facilities in Hawaiʻi. 

Senior care can be quite expensive to pay for out-of-pocket, especially if someone does not have long-term care insurance or significant retirement savings. Here are a few resources to find assistance:

• The State Kupuna Care Program provides services intended to help older adults live independently in the community, safely and healthily, for as long as possible. These services may include Adult Day Care, Assisted Transportation, Attendant Care, Case Management, Chore services, Home Delivered Meals, Homemaker, Transportation, and Personal Care. This program is administered by the Area Agencies on Aging (AAA). Call: (808) 643-ADRC (808-643-2372) or TTY (808) 643-0889 and your call will be directed to your local AAA based on the county you are calling from.
• Medicaid is a joint federal and state program that provides health coverage and long term services and supports for some people with limited income and resources. The Medicaid program in Hawaiʻi is called Med-QUEST. These are the Long-Term Services and Supports that Med-QUEST may provide to members who qualify and meet appropriate level of care.  Click here to get started on your application. This website has a quick Pre-Assessment to find out if you could qualify.
  • If interested in Medicaid Financial Consulting, this resource may be helpful: https://scottgardnerco.com/

• 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.
• 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.
  • Use a shower chair or bench to help prevent slips and falls in the bathroom.
  • Learn more about preventing falls at home. 
• Dementia Friendly Adaptations
  • Dementia can change the way the brain understands what the eyes see. This can cause difficulty navigating spaces without good color contrast or without good lighting. If someone is exit seeking and tends to wander, it can be helpful to disguise the exit doors by painting it the same color as the surrounding walls or covering it with a curtain. Here’s a few resources to learn more:
  • Make Your Home Dementia Friendly by Bright Focus
  • Explore a virtual tour of age-inclusive design.

Caregiving is a hard job that most of us are not prepared for, and yet we end up filling this role at a moment’s notice. Kudos to you for answering the call! Here are a few resources with information on how to navigate day to day activities with a person living with dementia

• Hale Kū‘ike Dementia Education Hub has multiple videos and articles about daily tasks like dining with dementia, activities, and dealing with behaviors. 
  • Dining with Dementia — Techniques to Bring Joy to the Table – Hale Kū‘ike  
  • Challenging Behaviors: Recognizing Unmet Needs
• Alzheimer’s Caregiving and The Caregivers have online resources about managing behaviors, meals, clothing, hygiene, and more. 
• Teepa Snow Videos: Dementia Care Tips for Hygiene, Bathing Support, and Validation 
  • Video: Using Hand-under-Hand™ to Assist with Getting Dressed – Shirts and Coats
  • Video: Care Partner Support Tips: Getting In and Out of the Car
  • Video: Using Hand-under-Hand to Support Someone to Stand
• Catholic Charities Hawai‘i Circle of Care for Dementia has a range of videos from past webinars on all topics related to dementia care.
  • Video: Dementia and Dysphagia (Swallowing Difficulties)

Join a Caregiver Support Group! These are safe, welcoming spaces to share, connect, and find encouragement with others who understand the caregiving journey. Whether you’re new to caregiving or have been doing it for years, you’re not alone. Come gain practical tips, emotional support, and a sense of community.

Visit our Events page to find a group near you.

• Apply for parking permit for persons with a disability. Here’s the website with more info.
• Before traveling, 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.

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 getting a medical ID bracelet or necklace for your person to wear in case they 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.
• Include a note with their name, address, and emergency contact information in your wallet or on your person.
• Create a list of familiar places that they frequently visit and places that they feel safe at. This may be a friend’s house, your former home, past job, favorite restaurant, etc. Sometimes they tend to go back to these familiar places when we’re lost. These will be some locations to search if they get lost.
• Keep a current photo and description with family or friends so that they have it ready in case they 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.

Palliative care is special medical care that helps people with serious illnesses feel better by easing pain, stress, and other symptoms. The goal is to improve quality of life for both your loved one and your family.

A team of trained doctors, nurses, and other specialists work together to provide extra support. This care is based on your loved one’s needs—not their prognosis—and can be given at any age, alongside other treatments. (Center to Advance Palliative Care, 2019)

A person living with late stage dementia may be eligible for palliative care services. Click here for community-based palliative care options in Hawai’i. Med-QUEST comprehensively covers palliative care services.

Learn more by visiting Hui Pohala and Kokua Mau.

In end-stage dementia, hospice services are recommended. Hospice care for someone with dementia may be needed when their condition has gotten much worse and they likely have six months or less to live. This can include needing maximum assistance with everyday tasks and not being able to swallow well. They may become non-verbal, lose control of bladder and bowel functions, and experience significant weight loss. It’s important to talk to a health care provider if you see these changes in your loved one. Hospice care helps prioritize quality of life, comfort, and support for both the person with dementia and their family.

Click here for Kokua Mau resources on hospice care in Hawai’i.