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Alzheimer’s disease

Caregiving and Alzheimer’s disease

Being a caregiver for someone with Alzheimer’s disease (AD) can be rewarding but it can also be physically and emotionally demanding — and can become even more so as the disease progresses.

Also keep in mind that being a caregiver to someone with AD is unique in many ways:

  • Symptoms — There will be times when the person you care for can live with little assistance, but then depend on you for even the simplest of tasks (like getting dressed or eating)
  • Medication — Expect fluctuations with how the person with AD responds to their treatment.
  • Perception — It’s natural for caregivers to suspect the person with AD is being manipulative or far too demanding. For example, when they’re behaving normally, it can be easy to think they can and should always live that way.

So be sure you’re taking care of yourself and getting the support you need.

Here are general tips for caregiving in all three stages of AD.

Early stage caregiving

People in this stage have mild impairment and usually don’t require a lot of help. They may be adjusting to their diagnosis and want to plan for the future.

Tips for caregivers:

  • Learn about the disease — to make it easier to be an effective caregiver.
  • Be a source of emotional support for the person in your care.
  • Be flexible with routines.
  • Try to remain positive.
  • Help with changing family roles and help plan for when the person with AD can no longer fulfill obligations (like host family dinners or help with child care).
  • Help the person with AD plan for the future — such as legal and financial matters.

Middle stage caregiving

Thinking and memory continue to get worse at this stage and the person with Alzheimer’s disease may need help with everyday tasks. Their memory and thinking will be affected. You may be caregiving on a more fulltime basis and keeping them safe is a priority.

Tips for caregivers:

  • Speak slowly, using simple language and hold eye contact with them
  • Making decisions may be difficult so limit their choices.
  • Make tasks simple — low-maintenance hairstyles and clothes that are easy to put on, take off and keep clean, for example.
  • Know their daily patterns and schedule activities and appointments around them.
  • Consider home support services.
  • Expect moods, emotions, behaviour and personality changes. Here’s some specific advice:

If they’re restless — pacing, unable to settle down, sleeplessness, drumming fingers:

  • Distract them — with an activity or snack.
  • Help them relax — gentle touching or soothing music.
  • Calm their surroundings — reduce noise and de-clutter (which can also help keep them safe if they’re pacing).

If they’re experiencing sundowning — a condition where confusion, irritability and restlessness increase as the sun sets:

  • Close window coverings and turn on indoor lights.
  • Be reassuring by letting them know everything is okay.
  • Make this time quiet time— reduce noise or play soothing music.
  • Ask someone they enjoy being with to pay a calming visit.
  • Distract them — watch a TV show, do a household chore together, go through favourite photographs.

If they’re being suspicious or paranoid — believe others are lying to them, stealing their things or trying to hurt them:

  • Don’t argue or try to reason with them.
  • If they accuse you of anything, don’t take it personally and try not to react.
  • Distract them with an activity they enjoy — like looking through photographs.
  • Reassure them that they’re safe.

If they’re being aggressive — either verbally or physically:

  • Remain calm, listen, and be understanding.
  • Try to find out why they’re behaving this way — for example, are they in pain, feel stressed, lonely, or over stimulated by noise or too many people around.
  • Reassure them with a calming voice and gentle touching.
  • Give them space.
  • Help them cool down — soothing music or taking them for a walk may help.
  • Distract them — with an activity or snack.
  • Keep your distance if you don’t feel safe. Call for help and leave if you must until it arrives.

Late stage caregiving

Many people at this stage require care around the clock since they cannot communicate or look after themselves.

Tips for caregivers:

  • Focus on their quality of life.
  • You may need to assist with feeding, personal hygiene (skin and body), using the toilet.
  • Monitor them for infection.
  • Help them manage pain.
  • Consider placement in a care facility (or hospice care).
  • Keep them connected — use touch and music, or take them outdoors.
  • Keep them present — use photographs, tell stories or show them favourite items to give them a sense of self.
  • Foster their spirituality — help them remain part of their faith-based community and traditions.

For more information and support, search “Alzheimer’” in Find Support for organizations in your area.

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