Caring for the Caregiver

Practical Advice and Tools to Support Caregivers of Persons with Dementia

This website is designed for you, the caregiver of a person with dementia. It provides some practical advice and tools to help you manage the more stressful or challenging parts of being a caregiver. It was developed using current evidence and input from experts on dementia and dementia care.

This site does not focus on other aspects of dementia. However, there are links to other websites provided.

In addition to the information provided on this site, we would like to invite you to download and use a mobile application that will provide you support right at the time you are responding with difficult care-related issues or are feeling stressed.

Simply submit your email address and we will send you the link and details to download the mobile application! It supports both iOS and Android devices.

Would you like to use a mobile application designed to try and help support you on your journey as a caregiver?

Participate in our Study!

Are you interested in downloading a mobile application that will provide you support right at the time you are responding with difficult care-related issues or are feeling stressed

You will be sent the link and instructions to download the application to your mobile device.

  • please use the same email throughout your participation

Caregivers are important too

Providing care to a person with dementia can be a 24-hour a day job. If at times you feel stressed or become overwhelmed, you are not alone.

It is important that you try to look after yourself and your own health. You should not feel guilty for looking after your own needs.

How can I decrease my stress or prevent myself from getting upset?

  • Don’t be too hard on yourself; you are doing the best you can in a difficult situation
  • Take 3 deep breaths
  • Try to relax (e.g. try meditation, listen to music, have a cup of tea, rest)
  • Exercise or go for a walk
  • Try to eat regular balanced meals
  • Minimize the use of alcohol as a way to relax
  • Talk to someone (e.g. friend, doctor) about how you are feeling
  • Ask others for help ( see “When should I think about taking a break?” below)
  • Speak to your doctor or other health care providers about other supports or resources that might be available in your area
  • Consider contacting your local Alzheimer Society about local support groups
  • Try online supports such as online chat groups

Caring for a person living with dementia

Providing care to a person with dementia can be a 24-hour a day job. If at times you feel stressed or become overwhelmed, you are not alone.

When should I think about taking a break?

Often as the dementia progresses, the person becomes more dependent on their primary or main caregiver, and can be reluctant to accept care from others or be apart from their primary caregiver.

Consider that this may happen and try to introduce alternate care providers prior to actually needing them. This will allow the alternate care provider time to develop a relationship with the person with dementia. This can decrease resistance, suspicion and paranoia.

It is often hard to ask for help, and when you really need it the help may not be available. Therefore when someone offers to help, even if you are not yet requiring help, try to think of a way they can help (e.g. make a meal that can be frozen, pick up groceries or dry cleaning). This accomplishes 2 things: 1) you get comfortable asking for and accepting help; 2) the person offering help stays connected and is more likely to be available when you really need their help.

Ways to Respond with Stressful Parts of Caring for a Person With Dementia

How can I get more sleep and still provide care?

Normal aging causes changes that impact sleep including:

  • decrease in ability to fall asleep and stay sleep
  • decrease in deep (restorative) sleep
  • increased urine production at night and a decrease in the amount your bladder can hold

As you get older, you do not require more sleep. Adults, including older adults, need 7 to 8 hours of sleep every 24 hours.

Persons with dementia can also have changes in their sleep pattern as a result of the disease.

If the person you are caring for does not sleep well at night consider trying the following:

Establish a nighttime routine that includes:

  • going to bed around the same time each night
  • having them use the toilet prior to going to bed
  • giving them a hand massage or gentle back rub
  • playing relaxing music or white noise recording
  • (if no allergies or contraindications) giving them a dose of acetaminophen if their sleep is bothered by pain (e.g. arthritis, back pain)
  • try to ensure the bedroom is dark and quiet

Some more things you can try:

  • Try a small amount of warm milk at bedtime, as warm milk has a natural sleep aid (tryptophan)
  • Avoid sleeping pills, including over-the-counter sleep aids and prescription sedatives, as they can actually worsen their confusion, lead to falls, and cause daytime sleepiness. These pills also do not improve sleep by more than a few minutes and can cause the person not to get as good a sleep
  • Take them for a walk just prior to sunset (see information on Sundowing)
  • Try getting them to take a warm bath an hour or so before bed, but not right before bed. Following a warm bath, the body begins to cool down. This can mimic the normal cooling of body temperature that occurs with sleep. Using a warm blanket that cools on its own (i.e. not a heating pad) around their chest and abdomen can accomplish the same thing
  • Avoid giving them caffeinated beverages in the late afternoon and evening (avoid coffee, regular tea, colas, hot chocolate)
  • Don’t give them a lot of fluids in the evening
  • Try to keep daytime naps to a single nap of 30 minutes or less. The more they sleep in the day, the less they will need to sleep at night. Adults only require 7 to 8 hours of sleep per 24 hours
  • If possible, consider getting someone else to provide care overnight so you can sleep

If you are having trouble sleeping:

If you are not asleep within 20 minutes of going to bed, get up from the bed and try a relaxing activity such as reading or meditation. Do not watch TV or use your computer or tablet, as these can prevent you from feeling tired.

What can I do if they won’t eat?

It is common for persons with dementia to loose interest in eating, or to have difficulty eating, as their disease progresses. Instead of focusing on how much the person eats, consider food as a form of enjoyment that can increase their quality of life.

Some specific things to try:

  • Consider offering finger foods (e.g. chicken fingers, bananas)
  • Avoid foods that could cause them to chock (e.g. whole grapes, hot dogs).
  • Consider soft-to-chew foods
  • Provide food throughout the day, in smaller portions, and allow them to graze if they find it hard to sit through a meal
  • Consider focusing more on quality of life, instead of providing a more restricted diet like a low fat or low salt diet
  • Do not try to give them food or drink if they are sleepy, as this increases their risk of chocking. They should be sitting up and alert when eating
  • Think outside the box. For example, there is nothing wrong with providing breakfast food at dinner if that is what they enjoy
  • If they need help to eat, give them small bites and make sure they have swallowed before offering another bite

How can I respond with their episodes of agitation or aggression?

Changes in the brain that occur with dementia can cause agitation and aggression. It can be hard to manage these behaviours.

Try the EASY approach:

Explain what you are going to do before doing it

  • Consider unmet care needs (e.g. pain, thirst, hunger, toileting)

Avoid arguments

  • consider completing care or task later if non-urgent
  • try giving them some space
  • don’t correct them it they are saying things that are not correct
  • avoid telling them to “calm down” as it may actually increase their agitation
  • avoid telling them their behaviour is wrong
  • consider playing music they enjoy

Smile

  • consider your non-verbal communication (i.e. the tone of your voice and your body language)
  • stay calm
  • take 3 deep breaths

You are the Key

  • slow down and don’t rush
  • re-assure them you are trying to help
  • allow more time for normal activities or to get to appointments
  • consider your own safety

What is often referred to as sundowning, but is really…
the onset of or increase in behaviours (e.g. agitation, confusion, anxiety, aggression) at sunset in persons with dementia. The cause is unclear.

Research suggests that regular exercise (e.g. going for a walk) 1 hour before sunset can decrease Sundowning. This may be because exercise helps alter high cortisol levels that are thought to lead to Sundowning.

How to reduce the risk of getting lost?

Persons with dementia can have difficulty finding their way and may get lost. They may also wander off.

Some ways to reduce the risk of getting lost and decrease the related risks include:

  • Register them with your local wandering registry by contacting your local Alzheimer Society or police department
  • Keep an up-to-date photo in case they do wander off
  • Consider getting a medical alert bracelet that states they have dementia
  • Try placing large red cardboard STOP signs on the doors to the outside
  • Consider placing a door lock either 3-4 feet above or below the door handle where one would not expect it to be
  • Consider adding a door chime or bell that will sound when the bedroom door or doors to the outside open
  • Take them on regular walks to satisfy their desire to wander
  • If they carry a cell phone, turn on the find a phone application if available on the phone
  • Consider other GPS (global positioning system) devices
  • Consider installing door knob ‘child’ safety device(s) to prevent them from opening the door

MEDICAL DISCLAIMER

This is not a medical device. Any user experiencing serious medical issues or needing medical advice should consult their doctor.

Any health information and related links is provided simply for your convenience. Any advice or other materials are intended for general information purposes only. They are not intended to be relied upon and are not a substitute for professional medical advice based on your personal circumstances. The advice and other materials are intended to support the relationship between you and your healthcare providers and not replace it.

We are not liable or responsible for any actions taken due to your having read or been told about such advice or other materials. In particular, to the fullest extent permitted by law, we give no representation or warranties about the accuracy, completeness, or suitability for any purpose of the advice, other materials and information published on this site/application.

The CARE website and related application was developed and evaluated using resources and research funding from: