Caring for Alzheimer’s – Important Family Conversations to Have Once Diagnosed

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If you or someone you love has recently been diagnosed with Alzheimer’s, you may feel like you have no idea what the next steps are. It is always helpful to have a unified support system with everyone on the same page. This support system may consist of family members, friends, personal care providers, support groups and even your loved one’s medical team.

Having a structured discussion with key members of your support system can help make sure you achieve a unified front. The following is a simple outline we find helpful for these types of conversations. Give it a try and see if it works for you!

  1. Set discussion guidelines: Each family unit has their own dynamics, so it may be of value to set guidelines for the discussion such as honesty, love, and compassion. These guidelines can also be more tangible, like setting a speaking order so that everyone gets a turn to express themselves.
  2. Give everyone an opportunity to express the emotions they are experiencing: An Alzheimer’s diagnosis can affect not only the individual being diagnosed, but those who will care for them as well. Give everyone the opportunity to express how this is affecting them and offer a safe space for them to be heard.
  3. Discuss the wishes of the person who has been diagnosed: This is the moment for the individual who is diagnosed to be heard, to share how they imagine things moving forward, and express how they envision the next stages of their life. Be sure that someone is taking notes and asking questions, prompting the individual to go deeper. Questions such as “And what does that look like to you?” or “Can you clarify or dive deeper into that point?” can get the individual thinking about their future and can also ensure that others are not making assumptions about their desires.
  4. Explore a care plan & discuss an alternate care plan as a backup: This can be exploring what type of help your loved one needs now or may need in the future. This can range from companionship, supervision, a move to a specialized facility or even discussing different levels of personalized support such as the private homecare services provided by BethCare.
  5. Determine how much each person is realistically capable of taking on & divide responsibilities: Each individual should be honest about how much of the care responsibilities they are able to take on. We recommend having one person who is considered the “point person” for the individual’s care management to reduce confusion and keep communications efficient. This is also the point when it might be valuable to explore outside care options such as support services, neighbours, friends, or government funded programs. 
  6. Assign a mandatary: A mandate protection document ensures that someone is assigned to take care of you and your property in case you are no longer able to do so for yourself. Planning this in advance is important in case of emergency. To learn more about mandate protection, check out this link
  7. Agree on tools for collaboration: You and your support system can use certain tools to help you collaborate and ensure a high level of care for your loved one. This can be simple like a diary left at the entrance of a loved one’s home to record observations or a group chat where updates are shared. 
  8. Prepare for next steps: These next steps are up to you and your support team. Based on your conversation, you may choose to do more research on Alzheimer’s or begin calling support services for information. Whatever your next steps, trust that your loved one’s support system has had a productive discussion and that the groundwork has been set for a fruitful life.

For more information about BethCare and its services, please refer to our website.

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