Reducing caregiver stress

The importance of reducing stress

"Fatigue is one of the major things that I see. People reaching the end of the rope in terms of their patience. Some of this is related to fatigue, because if you're constantly tired from being up all night with the person with Alzheimer's disease, how can you possibly be patient with them even though that's what they need?" – Dr. Julie Chandler, a physician in Yarmouth, Nova Scotia.

Caregiver stress is a normal part of dementia caregiving. There are steps you can take to reduce it but first, you must recognize it. The 10 warning signs of caregiver stress (see below) include denial that the person even has dementia, anger at the person with dementia and others, emotional sensitivity, social withdrawal and depression. Symptoms also include lack of sleep, lack of concentration, exhaustion, anxiety and an increase in health problems.

If you or someone you know is exhibiting signs of caregiver stress, it is important to seek help. These are just some of the things caregivers can do to make their lives a bit easier:

• The person under stress should go to the doctor for regular check-ups.
• Ask family members and friends for their help and support.
• Take advantage of community programs that provide respite and relief from caregiving, practical help with meals or housework and assistance with the care of the person with dementia.
• And plan ahead for both the immediate future and the long term.

The Alzheimer Society can help with services such as support groups, counselling and information resources. The Alzheimer Society also funds research into improved methods of caregiving and service delivery, as well as research into the cause and cure of Alzheimer's disease and other dementias.

10 warning signs of stress

Supporting a person with dementia requires time and energy. While it can be a rewarding experience, it can also be demanding and stressful. Knowing and recognizing signs of stress in yourself or someone you care about is the first step towards taking action.

If the following symptoms occur, call your doctor or contact your local Alzheimer Society for help.

1. Denial…about dementia and its effect on the person with dementia.
   "Everyone is overreacting. I know Mom will get better."
2. Anger…at the person with dementia, yourself and others.
   "If they ask me that question once more I will scream!"
3. Withdrawing socially...you no longer want to stay in touch with friends or participate in activities you once enjoyed.
   "I don't care about getting together with friends anymore."
4. Anxiety...about facing another day and what the future holds.
   "I'm worried about what will happen when I can no longer provide care."
5. Depression...you feel sad and hopeless a lot of the time.
   "I don't care anymore. What is wrong with me?"
6. Exhaustion...you barely have the energy to complete your daily tasks.
   "I don't have the energy to do anything anymore."
7. Sleeplessness...you wake up in the middle of the night or have nightmares and stressful dreams.
   "I rarely sleep through the night, and don't feel refreshed in the morning."
8. Emotional reactions...you cry at minor upsets; you are often irritable.
   "I cried when there was no milk for my coffee this morning. Then I yelled at my child."
9. Lack of concentration...you have trouble focusing and you find it difficult completing complex tasks.
   "I used to do the daily crossword. Now I am lucky if I can solve half of it."
10. Health problems...you may lose or gain weight, get sick more often (colds, flu), or develop chronic health problems (backaches, high blood pressure).
    "Since the spring, I have had either a cold or the flu. I just can't seem to shake them."

10 ways to reduce caregiver stress

1. Learn about dementia
   Knowing as much as you can about dementia and care strategies will prepare you for the dementia journey. Understanding how dementia affects the person will also help you comprehend and adapt to the changes.
2. Be realistic about dementia
   It is important, though difficult, to be realistic about dementia and how it will affect the person over time. Once you are realistic, it will be easier for you to adjust your expectations.
3. Be realistic about yourself
   You need to be realistic about how much you can do. What do you value most? A walk with the person you are caring for, time by yourself, or a tidy house? There is no “right” answer; only you know what matters most to you and how much you can do.
4. Accept your feelings
   When caring for a person with dementia, you will have many mixed feelings. In a single day, you may feel content, angry, guilty, happy, sad, embarrassed, afraid and helpless. These feelings may be confusing. But they are normal. Recognize that you are doing the best you can.
5. Share information and feelings with others
   Sharing information about dementia with family and friends will help them understand what is happening and prepare them to provide the help and support you need. It is also important to share your feelings. Find someone you feel comfortable talking with about your feelings. This may be a close friend or family member, someone you met at a support group, a member of your faith community, or a healthcare professional.
6. Be positive
   Your attitude can make a difference to the way you feel. Try to look at the positive side of things. Focusing on what the person can do, as opposed to the abilities lost, can make things easier. Try to make every day count. There can still be times that are special and rewarding.
7. Look for humour
   While dementia is serious, you may find certain situations have a bright side. Maintaining a sense of humour can be a good coping strategy.
8. Take care of yourself
   Your health is important. Do not ignore it. Eat proper meals and exercise regularly. Find ways to relax and try to get the rest you need. Make regular appointments with your doctor for check-ups. You also need to take regular breaks from caregiving. Do not wait until you are too exhausted to plan this. Take time to maintain interests and hobbies. Keep in touch with friends and family so you will not feel lonely and isolated. These things will give you strength to continue providing care.
9. Get help
   Support: You will need the support that comes from sharing thoughts and feelings with others. This could be individually, with a professional or as part of a dementia support group. Choose the form of support with which you are most comfortable. Practical help: It can be hard to ask for and accept help. But asking for help is not a sign of inadequate caregiving. You cannot care for a person with dementia alone. Ask family and friends for help. Most people will be willing to assist you. Programs in your community may offer help with household chores or caregiving tasks. Your local Alzheimer Society can help you access these.
10. Plan for the future
    Planning for the future can help relieve stress. If possible, review finances with the person with dementia and plan accordingly. Choices relating to future health and personal care decisions should be considered and recorded. Legal and estate planning should also be discussed. As well, think about an alternate caregiving plan in the event that you are unable to provide care in the future.

Caregiver stress checklist

How are you doing?

As dementia progresses, a person's abilities change. Eventually, full-time care will be needed. The person will require help with everyday activities, including bathing, dressing, eating and using the bathroom.

Providing this daily support can be exhausting. When considering how best to meet the needs of the person with dementia, it is important to think about what's best for the person while also evaluating the impact that caregiving is having on your own well-being.

More information and resources

Caring for yourself and your loved one while living with dementia. Indigenous caregiving resource created by the Native Women's Association of Canada.

Tonari Gumi Family Caregiver Support Group. A Japanese-language Zoom support group for family members caring for someone living with dementia. There is also an English-language Zoom support group for Japanese Canadian family caregivers.