Your caregiving role is dependent on the needs of the person living with dementia. In the later stages, a person living with dementia has significant challenges performing tasks. The person might need help with almost all their care needs. They may have severe cognitive impairment and difficulty communicating their needs. At this stage, preparations for end- of-life care are made. This is when that advanced care plan you made is put into action. The focus of care is now on comfort and sensory connection.
The following activities are for consideration only and offered as a guide.
Remember, you do not need to do everything yourself!
Education and Support
Contact the Dementia Society. Register for the Dementia Society’s caregiver support groups.
Speak with your Dementia Care Coach. Discuss strategies for connecting with your loved one.
Know that you will enter a new phase of grieving. You will need support through this stage. Ask your coach about grief support and resources in the community.
Visit the Dementia Society’s Dementia Learning Hub for more information about later stages.
The Caregiving Role
If you have not yet made an advanced care plan, Compassionate Ottawa offers some tips on its website.
If your loved one has moved into a care home, you may wish to visit often at first. As the person adjusts to their new environment, your visits may occur less often.
No matter where the person lives, your role is to inform, recommend, and encourage the best quality of care.
The goal is comfort care. Assist in providing comfort measures as appropriate.
Maintain dignity of the person.
The need for companionship remains:
Stay calm and attentive.
Communicate through sensory experiences like touch, music, reading aloud, reminiscing, etc.
Re-assure: I’m here with you, you are safe. Use a therapeutic touch, hold their hand.
Spend positive time with the person. Reminisce or recall humorous experiences.
Find comfort in the silence.
Communicate according to the abilities of the person. Be a good listener.
Provide spiritual support in line with the person’s wishes and life history. Arrange pastoral care or faith leader visits if appropriate.
Communicate regularly with family members and friends on how the person is doing.
If the person is in a care home, make the environment like home.
Decorate the room with seasonal decorations and appropriate articles from home.
If a brain autopsy has been requested, tell the doctor, the Retirement or Care Home, and the Funeral Home.
Working with Healthcare Staff
Get to know the staff, maintain regular contact with them.
Give positive feedback.
Make sure that health care staff know the person’s wishes for end of life care.
Communicate with staff any signs of discomfort.
Provide the life history for care staff to read. Make sure it is up-to-date.
If the person is in a care facility, attend care conferences. Help in the development of the care plan.
Use effective communication skills when talking to staff about any concerns you have.
The “How to Plan and Talk About Moving” fact sheet offers some helpful information.
Caring for Yourself
Share the care. Enlist others to sit with the person. Plan a schedule for visiting with family and friends.
Make sure you schedule some self-care such as physical exercise each day. Reconnect with pleasurable activities you once did.
Participate in grief support – Learn about dementia-related grief in this fact sheet.
Take satisfaction for the role you have played to promote quality of life.
If Your Loved One Passes Away
Reach out to your support network.
Review a checklist of what to do after someone passes away.
Reminisce about the person’s life, accomplishments, and their life story. Celebrate the life of the person.
Feel the emotions that come up. It’s okay to feel pain or to feel relief that the journey is over. Recognize the significance and the challenges that come with closure.