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Progression Late Stage Alzheimer Society
Progression Late Stage Alzheimer Society
LATE STAGE
This document is one in a five-part series on the stages of Alzheimer’s disease and is written
for the person living with dementia and their caregivers. The late stage of Alzheimer’s disease
is featured in this sheet. For information on the other stages of Alzheimer’s disease, please see
the following sheets in the series: The Progression of Alzheimer’s Disease – Early Stage; Middle
Stage; and End of Life. For a general overview of the disease, its stages and the approach to
care, please see the The Progression of Alzheimer’s Disease – Overview sheet.
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3. Spirituality
• For many people, being part of a faith community is an important component of their
identity. Tapping into the spiritual traditions which have been a significant part of the
person’s life can provide solace, continuity and a sense of self. Providing access to familiar
rituals, symbols and music can trigger memories and connect with a person at a deeply
emotional level when their cognitive abilities have been severely impaired.
• Spirituality can take many forms. Often, connecting to nature, music, rituals or stories can
fulfill a person’s spiritual needs.
Care issues
Below are some of the physical care issues which often occur in the late stage. The following
tips may help achieve maximum health and comfort for the person living with dementia.
Consult your healthcare provider on specific techniques or if you have any questions.
1. Difficulty swallowing foods and liquids
• Provide meals in a quiet and calm environment, away from a television and distractions.
• Ensure the person is in a comfortable, upright position during and after a meal.
• Allow plenty of time for the person to eat; several smaller meals or snacks throughout
the day may be easier to manage than three bigger meals.
• Foods that are soft or bite-sized may be easier to handle; be prepared for the possibility
of choking as swallowing becomes more difficult.
• Encourage the person to feed themselves by giving visual cues or gently using hand-over-
hand prompting. If the person needs assistance, offer the food and drink slowly – you may
have to remind the person to swallow. Finger foods that do not require the use of cutlery can
promote independence. Put one plate and utensil at their place to simplify the environment.
• Encourage fluid intake; substitute fruit juice, gelatin, sherbet or thickened liquids if
swallowing water is difficult.
• Record the person’s monthly weight.
• Ask for a referral to a dietician to determine dietary needs and additional ideas for nutrition.
2. Caring for the skin and body
• If the person is bed-ridden or chair-bound, change the person’s position at least every
two hours to relieve pressure. Consult a healthcare provider about the proper technique
to lift and turn the person.
• Protect bony areas with pillows and pads.
• Wash the skin gently and blot dry using minimal force and friction.
• Prevent “freezing” of the joints by maintaining the person’s range of motion. A
physiotherapist can demonstrate the proper technique for range of motion exercises.
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• Use adult briefs, bed pads and mattress covers as needed.
• Monitor bowel movements.
Planning
1. Care
Refer to and follow any documents that the person living with dementia has established
to address their care wishes. If plans are not already in place, start the process as soon as
possible. Establish who will be responsible for making care decisions. Follow the person’s
wishes, if you know them. Otherwise, decisions will need to be based on the person’s
lifelong values and desires and what you think the person would want. Your local
Alzheimer Society can advise you about care issues and the kinds of professionals who can
help to address them.
The person living with dementia may be living at home with a family member, have help
coming into the home or, in many cases, be residing in a long-term care home. If you are
caring for someone at home, you will need to have close connections to a physician and
all or some of the following: visiting nurse, social worker, occupational therapist, home
support services. They will be critical in working with you through this stage, helping you
create a plan for the best care possible and meeting with you regularly to review the plan.
Also, learn about the services that will be available as the person’s dementia progresses and
both of your needs change (home care services, respite care, community programs like
Meals on Wheels and long-term care). If you are considering a long-term care home, learn
what to look for and how to make the move as easy as possible.
If the person resides in a long-term care home:
• Talk to staff about the person’s unique interests, likes and dislikes to make sure they get
to know the person. Check out the All About Me booklet, a resource to share with staff
to help them learn more about the person. The booklet can be found at alzheimer.ca/
allaboutme.
• Keep current with the doctor and/or home’s staff about the person’s condition, care and
treatment.
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• Find out the key contacts for specific areas of caregiving (e.g., medical, social and spiritual).
• Tell staff your feelings and concerns, what help you need or questions you may have.
• Ask to have regular care planning meetings where family members and care
providers can attend.
• Ask for a copy of the care plan.
• Discuss options for meeting the person’s needs and preferences. Ask questions if
you need terms or procedures explained.
2. Legal and financial
If not already in place, arrange financial and legal matters and establish who will be
responsible for these functions. Follow the person’s wishes, if you know them. If there
are no explicit instructions for these matters, the family must make decisions taking into
consideration the person’s values, desires and what they believe the person would have
wanted. Your local Alzheimer Society can advise you on what issues will need to be
addressed and the kinds of professionals who can help with them.
What’s next?
Because Alzheimer’s disease is progressive, you will continue to need more information and
support. You may want to take time in this stage to think about what is important to you in
the years that you live with Alzheimer’s disease. The next sheet in this series is The Progression
of Alzheimer’s Disease – End of Life. Learning how dementia progresses and the changes that
it will bring can help you to make plans for the future. However, only you can decide when is
the right time to seek more information.
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Help and support from the Alzheimer Society
Living with Alzheimer’s disease at any stage can be very challenging. Whether you are the
person living with dementia or someone who supports them, it is normal to feel a variety of
emotions including grief and loss. It is important to acknowledge your feelings, care for yourself
and seek the practical help and emotional support that you need.
The Alzheimer Society in your community can provide educational resources to help you learn
more about Alzheimer’s disease, referrals to help you access practical support, and one-on-one
and group support to help cope with the emotional impact of the disease. Contact your local
Alzheimer Society or visit alzheimer.ca.
Additional resources
The Progression of Alzheimer’s Disease - Overview; Early Stage; Middle Stage; Late Stage; and End of
Life information sheets. Alzheimer Society of Canada (2016). Available at alzheimer.ca/stages
Guidelines for Care: Person-centred care of people with dementia living in care homes. Alzheimer
Society of Canada (2010).
Shared Experiences - Suggestions for those with Alzheimer’s Disease. Alzheimer Society of Canada
(2013). Also available in audio files at alzheimer.ca/sharedexperiences
All About Me. Alzheimer Society of Canada (2013). This fillable PDF booklet gives information
about the individual’s needs, preferences, likes, dislikes and interests. Available at
alzheimer.ca/allaboutme
Communication. Alzheimer Society of Canada (2018). Available at alzheimer.ca/communication
Long-Term Care. Alzheimer Society of Canada (2016). Available at alzheimer.ca/longtermcare
Personal Care. Alzheimer Society of Canada (2016). Available at alzheimer.ca/personalcare
Locating Devices. Alzheimer Society of Canada. Available at alzheimer.ca/locatingdevices
Ambiguous Loss and Grief for family members. Alzheimer Society of Canada (2013). Available at
alzheimer.ca/ambiguousloss
Dementia and End-of-Life Care. Alzheimer Society of Canada (2016). This is an online, four-piece
resource on dementia and end-of-life care. Available at alzheimer.ca/endoflife
The Alzheimer Society of Canada offers a wide variety of free information sheets and brochures. To
learn more, please visit our website at alzheimer.ca/resources
Note: This information sheet provides guidance but is not intended to replace the advice of a healthcare
professional. Consult your healthcare provider about changes in the person’s condition, or if you have questions
or concerns.
Created: 2008. Last reviewed: May 2022. Next review due: 2024. © Alzheimer Society, 2022. All rights reserved. PS300-4E 2022