Early Stage Planning
Education and support:
⃝ Contact local Alzheimer Society for information for both person with dementia and caregiver.
⃝ Register for First Link® Learning Series.
⃝ Register for support groups, early stage group and caregiver support group for yourself.
⃝ Obtain list of community supports to be available as a reference.
⃝ Engage the person with dementia in discussions when possible.
⃝ Plan to talk or meet with other family members to share the care and keep everyone informed.
⃝ Power of Attorney for Property signed (For the bank, you will need to show this signed copy as well as fill in the Bank Power of Attorney form).
⃝ Power of Attorney for Personal Care signed.
⃝ Legal will in place. Resource: Getting Your Legal and Financial House in Order
⃝ Advance Care Planning discussion has taken place regarding wishes
Resource: A Guide to Advance Care Planning, Ontario Seniors’ Secretariat.
⃝ If no spouse, and bank account is in name of person with dementia, obtain permission for another person (Power of Attorney) to operate account. Meet with the bank manager to have all the paperwork in order.
⃝ If spouse living with person with dementia, establish joint account, if not in place.
⃝ Establish a system of direct deposits for cheques and pension benefits and direct withdrawal for bill paying.
⃝ Remove multiple credit cards or lower credit limits.
⃝ Place person on National Do Not Call list to reduce telemarketing calls.
⃝ Identify your support system, who you can contact for help, and link responsibilities to specific persons.
⃝ Create a weekly/monthly schedule including activities and appointments of the person with dementia. Include your own “break times” into schedule.
⃝ Make a list of personal contacts to call in an emergency and a list of professional contacts involved in care.
⃝ Develop a health information record including medications and keep updated.
Resource: Personal Health Record
⃝ Develop a list of household information: companies and contact information for utilities.
⃝ Have all documentation in order and accessible including list of assets, bank account information, insurance policies, titles and deeds to property, vehicle information, and so on.
⃝ Keep an eye on driving capabilities and safety issues in the home.
⃝ Register for MedicAlert® Safely Home® for the person with dementia at
⃝ Consider living arrangements and start looking at options.
Resources: Home to Retirement Home
Middle Stage Planning
Education and support
⃝ Contact your local Alzheimer Society. Register for education sessions and caregiver support group.
⃝ Learn strategies for coping with middle stage of dementia.
Resource: Behaviours: Understanding changes
⃝ Plan activities for the person with dementia that are appropriate and promote satisfaction and achievement.
⃝ Develop alternate driving/transportation plan if necessary.
⃝ Update weekly schedule and ask for help from your support system.
⃝ Register for MedicAlert® Safely Home® for the person with dementia at 1-888-581-3794 if not already done so.
⃝ Assess living arrangements. Should consideration be made to move into a residential care home? (Retirement Home or Care Facility)
Resource: When a move is necessary
⃝ Write up a life history including key facts about the person’s life experiences that can be shared with care workers who come into the home.
Resource: All about me
⃝ Tell your own doctor that you are a caregiver of a person with dementia so that your health can be monitored.
Community services and taking a break
⃝ Now is the time to assess your need to bring in appropriate community services to assist.
Resource: Preparing for in-home help and support
⃝ Schedule breaks into your caregiving role.
Legal and financial issues
⃝ Review income tax benefit options.
Resource: Financial Planning
⃝ Become familiar with the long term care application process.
⃝ Assess financial resources against cost of increasing in-home support to keep person in their own home as long as possible.
Relocation to a care facility
⃝ Work with community case manager to determine when and where relocation will take place.
⃝ Attend a ‘Preparing for the Move’ workshop if available in your area – contact the Alzheimer Society for more information.
⃝ Prepare person with dementia for the move.
⃝ On the day of the move, go with the person and stay until settled.
⃝ To assist both you and the person with dementia, review the After the Move Fact Sheets which deal with adjustments for the caregiver, communicating and working with staff, and visiting.
Resources: After the Move:
Late Stage Planning
Education and support
⃝ Contact your local Alzheimer Society. Register for education sessions related to final stages of dementia. Register for a caregiver support group.
⃝ Know that you will enter a new phase of grieving and that you will need to obtain support through this stage.
⃝ Whether person is at home with 24 hour care or in a care facility, your role is to inform, advise, recommend and encourage the best quality care.
⃝ Provide the “All about me” history for care staff to read. Be sure it is up-to-date.
⃝ Participate in activities with the person as appropriate and as you are able.
⃝ If person is in a care facility, make the environment home-like. Decorate the room with seasonal decorations and appropriate articles from home.
⃝ Spend positive time with the person: reminisce, recall humorous experiences, find comfort in the silence.
⃝ Communicate according to communication abilities of the person. Be a good listener.
Resource: Communication Tips For Caregivers
⃝ Make sure that the end-of-life wishes of the person are communicated to health care staff.
⃝ If a brain autopsy has been requested, ensure that the doctor, Retirement Home or Long Term Care Home and Funeral Home are aware
Resource: Brain Autopsy Fact Sheet
Working with health care staff
⃝ Get to know the staff, maintain regular contact with them, see if you can participate in some activities, give positive feedback.
⃝ If person is in a care facility, attend care conferences and participate in development of plan of care.
⃝ If you have a concern about the care being provided, use effective communication skills when discussing with health care staff.
⃝ Initially you may wish to visit often and then as the person adjusts to new environment, your visits may become less often.
⃝ Enlist the help of your support system to sit with the person so that you can take a break.
⃝ Plan a schedule for visiting with family and friends.
⃝ Know that your life will change and you need to stay physically active and reconnect with pleasurable activities that you once enjoyed.
End Stage Planning
Education and support
⃝ Contact your local Alzheimer Society and gather information about end stage dementia and what to expect.
⃝ Let others know what you are going through and seek support.
⃝ 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 and communicate through sensory experiences such as touch, music, reading aloud, reminiscing, etc.
⃝ Reminisce – talk about favourite memories, play favourite music.
⃝ Re-assure – “I’m here with you”, “You are safe”; use touch as in holding their hand.
⃝ Provide spiritual support in line with person’s wishes and life history – for example: arrange pastoral care or faith leader visits; recite or play favorite readings, prayers, music.
⃝ Make sure that health care staff know the person’s wishes for end-of-life care.
⃝ Communicate with staff any signs of pain/discomfort.
⃝ Communicate regularly with family members, friends on how person is doing.
Resource: Visiting in the late stage
Caring for yourself
⃝ Share the care. Enlist others to sit with the person.
⃝ Make sure you schedule in some physical exercise on a daily basis.
⃝ Participate in grief support.
⃝ Celebrate the life of the person you have been caring for and take satisfaction for the role you have played to promote quality life.