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Living well on their terms

Late-Stage Care

As the brain health of someone you care about continues to decline, they will likely experience increased everyday needs, more difficulty communicating and moving, and a sharp decrease in their memory and thinking. This is an opportunity for them and their care partner(s) (like you) to ensure that they live on their terms, in comfort, and according to their wishes.

Now that they’ve reached late-stage care, what’s next?

Carry out the care plan: The care plan they developed with their clinicians, care partners (like you), and others should guide their care through the later stages of their condition. Supported by legal documents such as advance directives, wills, and power of attorney, this plan should continue to direct their treatment and preferences. An elder lawyer specializing in advance care planning and decisions can assist as needed.
Reassess living arrangements: As needed and in line with their care plan, reassess where they’re living. If round-the-clock assistance is necessary for basic, everyday activities and tasks, consider full-time care facilities. These transitions can be challenging at first but ultimately may be the best option for providing the care and support they need. As their condition further progresses to the point of great discomfort and difficulty, consider hospice or palliative care to provide the most comfort possible.
Provide comfort: Focus your caregiving on what brings them comfort. There are many simple, meaningful ways to increase comfort and build closeness:

Touch: Gentle hand massage, hugs, soft blankets and textures, stuffed animals, and fidget quilts
Sound: Their favorite music (especially from their youth), prayer, or spiritual rituals. Music and Memory has more information about the power of music in those with memory challenges
Smell: Aromatherapy (lavender, citrus) or scent jars
Sight: Photos or calming lighting

Bottom line: In the later stages of Alzheimer’s disease, it’s important to follow the established care plan. As the person you are caring for experiences more difficulty and discomfort, it may be time to prioritize providing comfort in the time remaining, which could involve reassessing living arrangements and a transition to hospice or palliative care.

When is it time to bring in hospice or palliative care?

The information provided on this website is for general informational and educational purposes only and is not intended to constitute medical advice, diagnosis, or treatment. It should not be relied upon as a substitute for professional medical judgment. Consult a qualified healthcare provider with any questions you may have regarding Alzheimer's disease, related conditions, or any medical condition.

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