ADJUST – The Acrostic to Care (Part 1 of 6): (A)ssemble a network

I am blessed to be a volunteer facilitator for an FTD Care Partner support group in my hometown region of Portland, Oregon.  I feel good listening to, and helping, others on the familiar journey.  I also do it to honor my late wife Maureen who passed away due to complications from FTD.

I watch our group closely as they explain to me the activities of their last week or month, and one thing is consistent:  when they have nobody assisting them, they are sad, frustrated, and feel helpless, yet those that have a strong network, often come with more energy, positivity, and have a story to tell that causes them to chuckle halfway through.  Both have loved ones with dementia, and both are the primary care partner.  However, one of them has learned how to draw others in to help.

Not everyone has that opportunity.  It is not uncommon for friends and family to pull away when someone has dementia, or they behave awkwardly as they do not know what to do or how to help.  The best way to get help is to ask for it and be VERY specific. “If I call in a grocery order, can you go pick it up for me tomorrow?”; “I need to run errands for 2 hours this Friday.  Can you sit with them and just keep them company?”; “I need a break to re-group and recharge.  Can you sit with them for the day?  I will have their meals prepared and the music they like cued up and will keep my phone on if there is an issue.”

With specific tasks, you will get better responses from some people.  Others will remain distant because they just want to remember your loved one as they were.

Some family will even deny there is a problem.  Your loved one may be high functioning and in front of others seems relatively fine.  I know that is maddening.  If you cannot convince them otherwise, then they are not a good part of your network.  I have some in the support group that changed the minds of the doubters when they dropped their loved one off for a few hours at their friend’s home and ran some errands.  They returned and saw the shock in their family’s eyes, “I . . . I didn’t see it.  I do now.”

Your network also needs to include the professionals that your loved one needs, and sometimes you need as well.  I am talking the neurologists, speech pathologist, social workers, palliative care team, elder law attorney, care services (either in home or remote), and others.

Some find a geriatric care manager invaluable.  Here is a link to give you more information about what they can do: ( These services are fee-for-service and often scaled based on what you want – Ex. they will go to the doctors appts. with your loved one or arrange transportation for different levels of pay.  Since it’s private pay, you would just need to be careful to choose an accredited or licensed person. The link for locating someone directly from the accrediting body can be found here:

My beautiful wife Maureen and I could have used a larger network.  We had a couple close friends that would help in a pinch, but often were left to ourselves.  Assembling a network is a valuable lesson that I have learned the hard way.  I should have tried harder.  I urge those I meet to do the same.  If nothing else, so you can get that break and provide better care to the one you love.