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You Are Not Alone...Building Your Dementia Care Team

At the Caregivers Summit, I attended the presentation "So Your Family Member Has Been Diagnosed with Dementia, Now What?" by Natalie Leary and Bobbi Matchar (Duke Dementia Family Support Program). One particular idea really struck me, which was to approach your dementia care process as if you were building a Board. Who do you need on your care team? How many chairs are needed at the table?

Managing care for a loved one with dementia can be a stressful, often lonely experience. We can feel abandoned by some friends, and receive unwanted advice from others. We can also struggle with the emotions of having to play a new role in the family, and perform new responsibilities for which we may feel unqualified. Building a team (or board) helps us define the help we need, choose the ways that we want to be supported, and helps us to feel connected so that we are not alone.

1) Begin by asking yourself/your family these questions about your care team:

  • Who is already at the table?

  • Who is local, who is remote?

  • How can tasks by divided (note that even small tasks may be able to be delegated...consider cooking, record-keeping, sharing doctor appointments)?

  • What other resources do you have (faith community, neighborhood, technology)?

2) Make a full list of all the ways you could be helped - don't hold back, big and small. Keep this list handy when a well-intentioned friend offers assistance.

3) Finally, consider this list of important "team members"

  • Therapist

  • Medical Team

  • Health Insurance (get specifics as to what is covered and what is not)

  • Attorney

  • Companions (all levels)

  • Adult Day Programs

  • Local and National Organizations (Alzheimer's Association has a free 24-hour helpline to offer assistance with challenging behaviors and answer questions)

  • Geriatric Care Managers

  • Support Groups (like those offered through the Duke Dementia Family Support Program).

Now it's your turn!

Have you ever thought of managing the care for your loved one as if you were building a board?

Who did you invite to the table?

What suggestions do you have for others who are building their own care team?

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