​​​Caring for Dementia ​Patients​​​​​​​​

As a caregiver of a dementia patient, it is normal to experience a wide range of emotions from guilt, frustration and anger, to loneliness and grief. The key to coping successfully is to recognise such feelings and learn how to keep them under control. As caregivers, being kind to yourselves first will allow you to better manage the caregiving responsibility.


Guilt

Seeing the changes in a loved one with dementia is painful. You may feel embarrassed about your situation or your loved one's behaviour such as rapid mood swings and personality changes. Or you may regret that you did not spend more time with them before he/she got dementia. Many caregivers feel this way and there is no need to feel guilty. But if you do, here are some positive ways to cope:

  • When you feel guilty, you often promise to do more than is possible. When you fail to keep those promises, you feel more guilty and your loved one becomes distressed. Avoid this vicious cycle so both you and your loved one will experience less stress.
  • Realise your own limitations. Do the best that you can and ask for help when you need it.
  • Talk to someone you can trust. Share your feelings and be open to counselling. Or join a support group of caregivers .


Anger and Frustration


Are you angry at family members who may not seem to care about the situation you are in? Are you angry at yourself for not being able to provide more care for your loved one with dementia? It is normal for caregivers to feel angry sometimes. But if you find yourself constantly angry, snapping, screaming, or crying with frustration, then you need to take some time off.

Give yourself permission for some me time. Do something for yourself such as spending time with relatives and friends, strolling in the park, or spending an afternoon in your favourite coffeeshop.

Ask someone to assist or replace you in providing care, at least for a short period to give yourself some respite.


Loneliness and Grief

As dementia progresses, the sufferer can forget who his/her caregiver is, and the relationship and love that once existed. The person with dementia may no longer understand how you care for him/her and not express gratitude for what you have done. This may make you, a caregiver, feel lonely as well as unappreciated. The loss of intimacy with your loved one also creates grief and sadness.

Do not isolate yourself. Set a regular schedule to visit family and friends. You need to recharge your spirits and bond with other family members.

Be open and flexible. Are there better care solutions available? Is there more support in the community that you could tap into? Consider joining caregivers' support groups to learn how others are coping with similar situations.


Be Gentle with Yourself

Confronting strong and uncomfortable feelings is not easy. Caring for persons with dementia requires compassion, tolerance, and patience. The path may not always be smooth, but it can be both a rewarding and humbling experience. Be kind to yourself and actively manage your emotions to reduce feelings of guilt, anger, and loneliness.

    • Be proactive. Ask for help when you need it. Your family, friends and neighbours may offer their help. Accept their offers. Tell them what you need them to do and guide them through the process.

    • Be realistic. Manage your expectations. Dementia and the severity of symptoms vary from person to person. Each person is unique and how they respond to support and treatment differs. Understand that you are doing everything to the best of your ability. Realise that taking good care of your physical, emotional, and mental well-being is important in being a good caregiver in the long term.

    • Stay positive. You are not in control of everything that is happening in your life. Keep an open mind and be optimistic. Tell yourself that you are doing the best you can each day and believe it!

    • Avoid burn out. Don't feel guilty pampering yourself. Eat well and take a short break from the daily routine occasionally.

    • Communicate. Persons with dementia may not be able to express themselves well. They may not be able to show their appreciation. Try to reach out to them creatively. Show them pictures, play their favourite songs, and read them stories to encourage respond.

    • Understand the illness. Learn as much as you can about dementia, so you know what to expect now and in the future. Ask your doctor about your loved one's condition. By understanding how dementia progresses, you can better manage your own feeling as symptoms become more severe.

    • Remember you are special. You may define yourself first and foremost as a caregiver. However, don't forget that you are also a friend, a son or daughter, or a sibling. You have other roles in life which are equally important and valued.

References:

  1. Taking Care of YOU: Self-care for Family Caregivers. (2012). Family Caregiver Alliance. https://www.caregiver.org/resource/taking-care-you-self-care-family-caregivers/
  2. A Guide to Taking Care of Yourself. (2021). Family Caregiver Alliance. https://www.caregiver.org/resource/guide-taking-care-yourself/?via=caregiver-resources,caring-for-yourself,general-self-care
  3. Caregiving and Ambiguous Loss. (2021). Family Caregiver Alliance. https://www.caregiver.org/resource/caregiving-and-ambiguous-loss/?via=caregiver-resources,caring-for-yourself,grief-and-loss