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To move from feeling “powerless” to “powerful” we need to plan to take control of our feelings and follow through on our plan so that we can move to a more positive state. It may be helpful to experiment with different solutions to situations that are causing stress.
To move from the negative to the positive we need to let go of how we “wish” things were. We also need to let go of trying to change the disease. By accepting our current situation and focusing on each day we can move to a more powerful place.
Download and print a copy of the activity sheet below. Take a few moments to review the recommended actions to manage your feelings.
These steps can be used to help you get in touch with the feelings that are most difficult for you as a care partner and to plan actions that will help you manage them.
Find people you are comfortable with to share your feelings and emotions with. This may be a member of your family, a good friend, members of a support group, or someone at the local Alzheimer Society.
Care partners often become isolated and lonely, so it is important to stay connected to people and share your feelings.
A “family meeting” is a chance for spouses, children, and others to discuss the care of a person with dementia. It helps families identify needs, share responsibilities, and devise a plan that will best serve the person and the family as a whole.
A family meeting respects the persons’ wishes and prior decisions. It also acknowledges and supports the primary care partner.
Download and print a copy of the activity sheet below. Then, take a few moments to review the tips for holding a family meeting.
A well-planned family meeting can help to:
It can be challenging for family members to agree on what to do, but through talking and understanding, conflict can be reduced, and crisis decision-making avoided. The Alzheimer Society can connect you with professional support from counsellors, social workers, and family mediators.
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Progression Series: Late Stage
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Decisions will need to be made throughout the late stage of dementia. These decisions may be difficult and you may feel uncomfortable making them, especially those dealing with life-prolonging treatments and what the individual might consider a comfortable death.
Sometimes, having a plan to follow when making decisions is helpful. This allows you to think things through ahead of time rather than just reacting in a crisis.
Click the link below to access a personal decision guide. Take a few moments to review the guide and use it to help you work through a current decision that you are facing.
All end-of-life care decisions should be guided by respecting the expressed wishes of the person with dementia. A guiding principle should be to uphold one's dignity, privacy, and safety.
When making decisions on behalf of another person, it is important to follow the person's wishes if they are known. If they have not been communicated, knowing his/her values and beliefs can help you make a decision that most closely resembles the one he/she would have made.
Dementia and End-of-Life, Part 1: What decisions do I need to make?
Progression Series: Late Stage
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This session includes the following parts:
Part 1: Late Stage Dementia
Part 2: Decision Making
Part 3: Holding a Family Meeting
Part 4: Managing Feelings
Part 5: Staying the Course
Part 6: Questions for Reflection
Part 7: Questions Others Have Asked
Summary
Work through the various parts in the session at your leisure. Move from one part to another at your own pace and in the order that makes sense to you, based on your own needs and interests.
At any time, you may scroll to the Search bar and type a specific question or topic to learn more.
Click on the image below to download and print a brief self-reflection activity sheet. The purpose of this tool is to help you think about what you have learned and to provide a space for you to document some of your thoughts and ideas for moving forward.
When a person living with dementia needs full-time support, moving to long-term care may be the step for you and your family.
From the beginning of this program, we have encouraged you to get organized by ensuring you had conversations with your person with dementia to know their wishes. We also encouraged you to ensure a Personal Directive and an Enduring Power of Attorney document were completed. This is the time you will need to use these documents to help you make decisions. Use the wishes of the person to guide you.
You will hear a lot of different terms used by health professionals. Click on the following link to learn the common words and their meaning via the Continuing Care Glossary: https://www.albertahealthservices.ca/cc/Page15500.aspx
In Alberta, Supportive Living sites can be accessed through Continuing Care services. This includes long-term care. You may already be connected with Continuing Care if you are receiving Home Care.
Anyone can call to start services and determine what you are eligible for.
Find out more information here: https://www.albertahealthservices.ca/cc/Page15487.aspx.
The first step is to get connected with a Case Manager. This is a health professional who will assess the needs of the person with dementia as well as the care partner’s needs. They also handle the application to supportive living sites. If the person living with dementia is currently in hospital, the transition coordinator will be involved with the application.
Find out more information here: https://www.albertahealthservices.ca/cc/Page15484.aspx
With the help of a case manager, the needs of the person living with dementia will steer you towards the type of accommodation to look for.
Find more information about Continuing Care Services here: https://www.albertahealthservices.ca/cc/Page15339.aspx.
Alberta Health Services has a Continuing Care Facility Directory that can help you narrow down your search.
You can access more information here: https://www.albertahealthservices.ca/cc/page15328.aspx#ccfd.
Click on the image below to download and print a brief self-reflection activity sheet. The purpose of this tool is to help you think about what you have learned and to provide a space for you to document some of your thoughts and ideas for moving forward.
All care partners of people living with dementia experience their own unique journey.
Some care partners progress through a series of stages, while others do not follow any set pattern. Here’s a look at the typical stages you might experience.
First Steps for Families After Diagnosis
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Sharing personal stories and experiences can be an invaluable support and can give insight to all who care for people with dementia. Similarly, reflections from people with dementia and those who are making a difference in their lives can inspire us to keep our hopes and dreams alive.
In this touching video, people share their hopes for the future. The video features care partners, people living with dementia and Alzheimer Society of Alberta and Northwest Territories staff.
Take a few minutes to watch the video and listen to the words and messages. And think about what hope for the future means for you.
After you watch the video, take a few minutes to reflect on the following questions. Feel free to make some notes.
In this video, we talk with psychologist and hope specialist Wendy Edey about how maintaining hope can help along the care partner journey. Learn about the importance of maintaining hope and knowing how to ask for help when you need support.
Take a few minutes to watch the video. Feel free to make some notes as you listen.
After you watch the video, take a few minutes to reflect on the following questions. Feel free to make some notes.
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Progression Series: Late Stage
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