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What to Expect in Late-Stage Alzheimer’s Disease

Getting a positive Alzheimer’s disease diagnosis can be jarring for patients and their families. They need to prepare for many significant changes over time, seek support, and ensure that their loved one is always well-cared for during every stage of the disease.

Although Alzheimer’s disease symptoms are often self-evident, the person might not understand or be able to communicate what they’re going through. Compassion and understanding about the disease are crucial when supporting someone through their Alzheimer’s journey.

What is Alzheimer’s disease?

Alzheimer’s disease is the most common form of dementia. It is a progressive condition caused by abnormal proteins in the brain cells, leading to the loss of memory and other cognitive skills. You may notice some these common cognitive impairments in someone with Alzheimer’s disease:

  • Noticeable memory loss
  • Problems with verbal communication skills
  • Reduced motor skills and coordination
  • Impaired problem-solving, reasoning, and judgemental skills
  • Disorientation, confusion, and disorganization
  • Wandering or getting lost
  • Severe mood changes when altered worldview is challenged

The effects of Alzheimer’s disease on the patient fuel feelings of frustration, confusion, anger, and fear, which can get worse as time goes on. However, the person can still feel joy and fulfillment when treated with love and compassion, even during late-stage Alzheimer’s (also referred to as “severe” or “advanced Alzheimer’s disease”).

What to expect in late-stage Alzheimer’s disease

People are considered to be in late-stage Alzheimer’s disease when their mental and physical deterioration is so severe that they require 24-hour care to ensure their basic necessities are met. 

At this point, it is not possible for the person to live independently. They can continue to live at home with ongoing support from family members, close friends, or professional caregivers who specialize in dementia-related diseases, otherwise it will be necessary to move them to a long-term care facility.

People in late-stage Alzheimer’s disease tend to experience:

  • Advanced memory impairment
  • Disorientation of time and location
  • Severe communication impairment, with increased reliance on non-verbal communication
  • Inability to process information
  • Loss of ability to walk unassisted
  • Lack of ability to feed themselves without assistance
  • Incontinence, and needing help using the toilet
  • Cannot hold their head up
  • Difficulty smiling
  • Problems swallowing
  • Possible weight loss

The focus of the caregivers’ long-term care strategy should continue to focus on bringing joy and fulfillment into their lives with activities within the bounds of their current abilities, and tailored to their likes and interests.

9 Ways to connect with people with late-stage Alzheimer’s disease

Although you’ve seen significant change in your loved one since their Alzheimer’s diagnosis, it’s important to remember that the person you’ve known and cared for is still there. They’re still that same individual with likes and interests, and who is still capable of feeling happiness and joy, even if they aren’t always able to express it.

Late-stage Alzheimer’s patients often lose the ability to communicate verbally. They will increasingly interact with the world through their primary senses, meaning that they can still hear your voice, feel your touch, and enjoy certain smells. Even if the person has difficulty recognizing you, they’ll feel your loving presence, which keeps them feeling safe and reassured.

In this stage of Alzheimer’s disease before end-of-life care is required, you can still maintain meaningful connections with the person. Here are 9 ways you can do that:

  1. Gentle touching: Handholding, hair brushing, or a light massage of the feet, legs, or hands are calming and pleasant to the person with Alzheimer’s
  2. Reading out loud: Reading a favourite book or poem to them in a warm, soothing voice can help nurture feelings of serenity and safety
  3. Comforting smells: The scent of a favourite flower, perfume, or food can be pleasing to the person, especially if it recalls happy memories
  4. Reminiscing together: Looking at old family photographs, videos, or items in a memory box or talking about pleasant memories can validate their “personhood”, and reassure them that they have a rich story full of love
  5. Playing music: Listening to music that the person enjoys will bring them joy and stir happy memories 
  6. Watching videos: Nature DVDs with soft, tranquil sounds can be relaxing for people with Alzheimer’s
  7. Interacting with pets: Allowing the person to pet a cat or dog can bring feelings of comfort and reduce anxiety
  8. Getting outdoors: Spending time outdoors, especially in nature settings, helps to relieve anxiety and encourages healthy sleep patterns
  9. Promoting faith: If the person with late-stage Alzheimer’s disease is part of a faith community, allowing them access to resources that fulfill their beliefs, such as religious recordings or visits from a spiritual leader, will bring them a sense of added support and comfort

Tips for Alzheimer’s caregivers

It’s admirable to want to care for someone with late-stage Alzheimer’s. It takes a lot of patience, selflessness, and discipline to step up and help a friend or family member who requires 24-hour care.

Because someone at this point in their Alzheimer’s journey is so dependent on you, you’ll need to diligently exercise self-care to ensure that you have the energy and positive mindset needed to be able to continue looking after that person. Here are some tips on how to take care of yourself while taking care of someone else:

  • Recruit responsible family members or hire professional caregivers to help care for the person so you get regular breaks
  • Maintain social activities and contact with friends and families
  • Eat healthy meals regularly
  • Exercise often, even if you just go for a brisk walk
  • Smile often, keep a positive attitude, and show a sense of humour
  • Join a caregiver support group (in person or online) to share stories with others who face day-to-day caregiver challenges 
  • Recognize the signs of stress, anxiety, and depression, and seek help if these feelings become overwhelming

Always remember: you and your family don’t have to be in this alone. If you feel you need help caring for someone with late-stage Alzheimer’s disease, be sure to seek support from your local Alzheimer’s association, or professional caregivers who specialize in in-home Alzheimer’s disease and dementia care services.

Alzheimer’s caregivers in Etobicoke, Mississauga, and Toronto

At CareHop, we understand the challenges families face when a loved one is diagnosed with Alzheimer’s disease or dementia. That’s why our team of healthcare professionals are committed to helping families through their Alzheimer’s journey by providing professional, respectful, and empathetic on-demand or live-inAlzheimer’s disease or dementia care

We also offer homemaking and meal preparation, companionship at home or for outside activities, and help with personal care services that ensure complete care for your loved one. Our focus is always to bring joy and sunshine into their lives, and take all the work and worry away from you.  If you have any questions about our customized personal care services, please reach out to us anytime.

About the Author

Michael Lu is the founder of CareHop, specializing in providing compassionate support for individuals and families touched by Alzheimer’s disease and dementia.