I’m caring for someone with dementia or Alzheimer’s disease

There are many different types of dementia (disorders of the brain), including Alzheimer’s disease. Currently there is no cure or way to reverse the progression of dementia. The more the disease progresses, the more help your care recipient will require.

Understanding the progression of dementia, how you can help and what you need to do.

In the early stages:

Common symptoms include forgetfulness, communication difficulties, and changes in mood and behaviour. People in this stage may understand that they are changing and be able to talk to others about it. They may also wish to help plan and direct their future care.

How you can help:

  • Encourage activities such as puzzles and reading to help stimulate their brain 
  • Spend time talking to them and encourage visits with friends and family
  • Be flexible about routines and expectations
  • Try to be positive and use humour as a part of your care strategy
  • Offer information if the person is struggling but don’t speak for them

What you need to do:

While your care recipient is still able, talk to them about their wishes for future care. An open  conversation now will help prepare you to make decisions about medical interventions and end-of-life care on your care recipient’s behalf as the disease progresses. Making decisions together can also give you both comfort and peace of mind.

  • Instead of focusing on medical interventions, your conversation should focus on your care recipient’s values and what’s important to them. What makes life worth living? What kind of living would they accept? What trade-offs would they make? What would make prolonging life unacceptable for them? When nearing death, what would make it peaceful for them?
  • Talk to your family member’s healthcare team about any questions or concerns you may have regarding end-of-life care, including options for hospice and palliative care
  • Talk to a family member, friend or counsellor about your feelings and concerns

In the middle stages:

Thinking and memory will continue to deteriorate. People in the middle stages of Alzheimer’s disease or dementia will need more help with daily tasks. Assistance with dressing, bathing and toileting will eventually become necessary. Individuals may also wander from home and lose their way.

How you can help:

  • Try to focus on the abilities that remain vs. those that are lost
  • Avoid disagreeing, arguing or trying to convince the individual that what they believe is untrue or inaccurate
  • Remember that changes to their behaviour and mood are not their fault – it’s the disease
  • Make time for yourself – you can’t fill from an empty cup

What you need to do:

  • Look into respite care options, including adult day programs, volunteer caregivers and friendly visiting programs
  • Install a door chime, so you’ll be alerted if your care recipient tries to leave the home
  • Minimize the risk of wandering by using a GPS device or programs such as MedicAlert® Safely Home®
  • Look into options for long term care

In later stages:

In later stages, the person living with dementia eventually becomes unable to communicate verbally or look after themselves. They experience severe impairment in memory, the loss of the ability to process new information and recognize time, place and people, and eventually they lose the ability to eat, walk and use the toilet without assistance. Care is required 24 hours a day.

How you can help:

  • Nonverbal communication – smiles, hugs, holding hands – becomes increasingly important
  • Brush their hair. Give a gentle massage to the hands, legs or feet. The person may find that stroking a pet or a soft fabric is calming
  • Reassure and comfort the person
  • Tell stories about past celebrations and enjoyable times; reminisce using photo albums or videos
  • Play the person’s favourite music
  • Reading to them can be comforting, even if they may not understand the words. The tone and rhythm of your voice is more important than what you’re saying

What you need to do:

  • Look into professional home care services to help with bathing, medications, and other personal and medical care
  • Tell family and friends what you need and don’t be afraid or embarrassed to ask for their help
  • Get emotional support – connect with other caregivers in our online support group

Additional resources:

  • Connect with the Alzheimer Society of Ontario at alzheimer.ca/on or call 1-800-879-4226 for help with respite care options, including adult day programs, professional homecare services, Meals on Wheels and more
  • Download A Caregiver’s Guide to End-of-Life care 

Not sure where to start? Call our 24/7 helpline or talk to us in our live chat to find resources in your community.

*Source: Alzheimer Society of Canada

Dementia content sources:

https://alzheimer.ca/en/help-support/im-caring-person-living-dementia/what-expect-persons-dementia-progresses

https://archive.alzheimer.ca/sites/default/files/files/national/progression-series/progression_early-stage.pdf?_ga=2.119718856.1967556966.1605546531-706346377.1604939142

https://archive.alzheimer.ca/sites/default/files/files/national/progression-series/progression_middle-stage.pdf?_ga=2.187868392.1967556966.1605546531-706346377.1604939142

(Note: source provided in content plan is not about dementia specifically)

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