Home > Living Well with Dementia > Caring for Caregivers
Providing care for people with dementia can be a long and emotional journey with a lot of stress. A survey conducted by the Alzheimer Society of Canada in 2017 finds that one in five Canadians have experience caring for someone living with dementia. The respondents shared their experiences as follows:[1]
1/5
of caregivers “agree” they sometimes feel embarrassed to be seen in public with the person they care for.
41%
of caregivers believe their life would be better if they weren’t caring for someone living with dementia.
87%
of caregivers wish that more people understood the realities of caring for someone with dementia. 2/3 of caregivers find the experience of caring for someone with dementia to be isolating.
Dementia brings peculiar mental and behavioural changes. Not only those living with it suffer, but caregivers can easily become exhausted. With no end of their caring role in sight, many caregivers endure a lot of emotional pain and struggles. Although the caring process can be a good experience, it is also full of stress. Caregivers need to understand and recognize their stress symptoms and seek timely help.
Caring for Caregivers
Providing care for people with dementia can be a long and emotional journey with a lot of stress. A survey conducted by the Alzheimer Society of Canada in 2017 finds that one in five Canadians have experience caring for someone living with dementia. The respondents shared their experiences as follows:[1]
1/5
of caregivers “agree” they sometimes feel embarrassed to be seen in public with the person they care for.
41%
of caregivers believe their life would be better if they weren’t caring for someone living with dementia.
87%
of caregivers wish that more people understood the realities of caring for someone with dementia. 2/3 of caregivers find the experience of caring for someone with dementia to be isolating.
Dementia brings peculiar mental and behavioural changes. Not only those living with it suffer, but caregivers can easily become exhausted. With no end of their caring role in sight, many caregivers endure a lot of emotional pain and struggles. Although the caring process can be a good experience, it is also full of stress. Caregivers need to understand and recognize their stress symptoms and seek timely help.
10 Common Symptoms of Caregiver Stress
- Denial about the disease and its effect on the person with the disease. “Everyone is overreacting. I know my parent will get better.”
- Anger at the person with dementia, yourself and others. “If they ask me that question once more I will scream!”
- 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.”
- Anxiety about facing another day and what the future holds. “I’m worried about what will happen when I can no longer provide care.”
- Depression: You feel sad and hopeless a lot of the time. “I don’t care anymore. What is wrong with me?”
- Exhaustion: You barely have the energy to complete your daily tasks. “I don’t have the energy to do anything anymore.”
- 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.”
- 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.”
- 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.”
- 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 Common Symptoms of Caregiver Stress
- Denial about the disease and its effect on the person with the disease. “Everyone is overreacting. I know my parent will get better.”
- Anger at the person with dementia, yourself and others. “If they ask me that question once more I will scream!”
- 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.”
- Anxiety about facing another day and what the future holds. “I’m worried about what will happen when I can no longer provide care.”
- Depression: You feel sad and hopeless a lot of the time. “I don’t care anymore. What is wrong with me?”
- Exhaustion: You barely have the energy to complete your daily tasks. “I don’t have the energy to do anything anymore.”
- 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.”
- 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.”
- 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.”
- 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.”
Suggestions for Caregivers
To care for someone living with dementia, you must first equip yourself. You may well be the most important person in your loved one’s life. So, your mental and physical health is very important. You must manage your health well in order to have the strength and ability to better the quality of life for you and your loved one. The suggestions below will help maintain your health and well-being:
1. Learn about dementia and be realistic; understand the person living with dementia.
Learning as much as you can about dementia and caring strategies will prepare you for the caring journey. Understanding how dementia will affect your loved one will help you recognize and adapt to changes. Be realistic and you will adjust your expectations more easily. Your loved one is still an individual with their personality and feelings. So, you need to consider their thoughts and feelings and ask what they want at the right time. Be more empathetic. Think about what they want to do or what help they need. Consider their perspectives more and there will be less conflicts in the caring process.
2. Be realistic about yourself and take care of yourself.
You need to be realistic about how much you can do. Only you know that and what is most important to you. Your health is very important. Don’t neglect it; take care of yourself first. Take time for yourself. Find ways to relax. Try to take a break and let your body and mind rest. You have the right to seek help from government or the community. Make regular appointments with your doctor for checkups. Spend time on your interests and hobbies. Connect with friends and family so you won’t feel lonely and isolated. A right diet and regular exercise will give you strength to continue providing care.[2]
3. Accept your feelings and stay optimistic.
Accept your feelings. When caring for a person with dementia, you will have many mixed feelings. In a single day, you may feel contented, angry, guilty, happy, sad, embarrassed, afraid and helpless. These feelings are confusing, but they are normal. Know that you are doing your best. Your attitude affects your feelings. Try to look at the positive side. Focus on what your loved one can do rather than lost abilities. That will make things easier. Make every day count. There can still be moments that are special and rewarding. Share your feelings with family and friends. Find someone you feel comfortable talking with about your feelings. This may be a close friend or family member, someone in the support group, a member of the faith community or healthcare professional. Maintaining a sense of humour is also a very good coping strategy.
4. Seek help and enrich your knowledge.
Dementia is a serious illness. Asking for help is not a sign of inadequate caring. If you cannot take care of your loved one alone, consider sharing the work with professionals or other family members. Sharing information about dementia with family and friends will help them understand what is happening and prepare them to provide help and support. Overcaring may result in decreasing self-care abilities of the person and increasing stress of the caregiver. In fact, maintaining your loved one’s abilities and activities of daily living is the latest caring concept. Community services can provide help with house chores or personal care. Join a support group for exchanges with other caregivers with similar experience. Besides getting relief from the stress of caring, there are professionals who answer your questions and provide the latest information. You will get caring tips, help and support for more effective caring.
5. Plan for the future.
Planning for the future can help relieve stress. Even when the person with dementia is till capable, review their finances and physical conditions and make plans accordingly. Consider and record options related to future health and personal care decisions. Discuss legal and estate planning. Similarly, consider making alternate care plans in the event that you cannot provide care in the future or temporarily.
Suggestions for Caregivers
To care for someone living with dementia, you must first equip yourself. You may well be the most important person in your loved one’s life. So, your mental and physical health is very important. You must manage your health well in order to have the strength and ability to better the quality of life for you and your loved one. The suggestions below will help maintain your health and well-being:
1. Learn about dementia and be realistic; understand the person living with dementia.
Learning as much as you can about dementia and caring strategies will prepare you for the caring journey. Understanding how dementia will affect your loved one will help you recognize and adapt to changes. Be realistic and you will adjust your expectations more easily. Your loved one is still an individual with their personality and feelings. So, you need to consider their thoughts and feelings and ask what they want at the right time. Be more empathetic. Think about what they want to do or what help they need. Consider their perspectives more and there will be less conflicts in the caring process.
2. Be realistic about yourself and take care of yourself.
You need to be realistic about how much you can do. Only you know that and what is most important to you. Your health is very important. Don’t neglect it; take care of yourself first. Take time for yourself. Find ways to relax. Try to take a break and let your body and mind rest. You have the right to seek help from government or the community. Make regular appointments with your doctor for checkups. Spend time on your interests and hobbies. Connect with friends and family so you won’t feel lonely and isolated. A right diet and regular exercise will give you strength to continue providing care.[2]
3. Accept your feelings and stay optimistic.
Accept your feelings. When caring for a person with dementia, you will have many mixed feelings. In a single day, you may feel contented, angry, guilty, happy, sad, embarrassed, afraid and helpless. These feelings are confusing, but they are normal. Know that you are doing your best. Your attitude affects your feelings. Try to look at the positive side. Focus on what your loved one can do rather than lost abilities. That will make things easier. Make every day count. There can still be moments that are special and rewarding. Share your feelings with family and friends. Find someone you feel comfortable talking with about your feelings. This may be a close friend or family member, someone in the support group, a member of the faith community or healthcare professional. Maintaining a sense of humour is also a very good coping strategy.
4. Seek help and enrich your knowledge.
Dementia is a serious illness. Asking for help is not a sign of inadequate caring. If you cannot take care of your loved one alone, consider sharing the work with professionals or other family members. Sharing information about dementia with family and friends will help them understand what is happening and prepare them to provide help and support. Overcaring may result in decreasing self-care abilities of the person and increasing stress of the caregiver. In fact, maintaining your loved one’s abilities and activities of daily living is the latest caring concept. Community services can provide help with house chores or personal care. Join a support group for exchanges with other caregivers with similar experience. Besides getting relief from the stress of caring, there are professionals who answer your questions and provide the latest information. You will get caring tips, help and support for more effective caring.
5. Plan for the future.
Planning for the future can help relieve stress. Even when the person with dementia is till capable, review their finances and physical conditions and make plans accordingly. Consider and record options related to future health and personal care decisions. Discuss legal and estate planning. Similarly, consider making alternate care plans in the event that you cannot provide care in the future or temporarily.
References
[1] Alzheimer Society. (2018). 2017 Awareness Survey Executive Summary.
https://alzheimer.ca/sites/default/files/documents/2017_AWARENESS-SURVEY_EXECUTIVE_SUMMARY_0.pdf
[2] Alzheimer Society. (2013). Alzheimer’s disease: Reducing caregiver stress.
https://alzheimer.ca/sites/default/files/documents/reducing-caregiver-stress.pdf
