Next Steps & Planning After a Dementia Diagnosis

We've been tackling the topic of fears in eldercare and a diagnosis with dementia can be something feared even more than death. And it is a kind of death or loss of self. Dementia is an umbrella term for progressive brain disease and currently has no cure or even a way to slow it down. For families sitting with a new diagnosis there is a great deal of grieving as well as planning to do. The key here is to lean into the experience we fear and not run away from it. We must be careful not to let fear debilitate us or remove our presence from the situation when our compassion, creativity, and problem-solving faculties are needed the most.

Here are 7 tips for families going through a diagnosis with Alzheimer’s or other dementias:

No. 1 Get It Together

Gather and/ or create advance directives and core documents needed to make future decisions financial, logistical, and healthcare decisions. Your checklist should include:

No. 2 Manage Online Presence

From banking logins to Facebook accounts, aging adults now have a growing online presence, which makes managing those accounts after death complicated for family. USA.gov actually advises you appoint someone you trust as your online executor and hand over all your passwords with a clear statement about how you’d like each account to be handled after your death. This may even be necessary to close some accounts. Common accounts to think about include:

  • Online banking
  • Utility accounts/ automatic bill pay
  • Email accounts
  • Facebook/ Twitter
  • Amazon/ eBay/ iTunes and Apple ID
  • Computer passwords
  • Magazine subscription accounts

No.3 Talk Turkey

Not only will it be important to log all sources of income and ongoing bills, but families need to have the difficult conversations about the benefits and resources available and the costs of long-term care and healthcare. This is a crucial step in the process of making difficult choices that are best for your family.

No.4 Take Time to Remember & Be Family

Find ways to capture the stories and memories of your loved one. This can be done in many different ways such as recording the loved one telling an old family story, having fun professional family pictures taken, planning a family reunion, reading a favorite book together out loud, or just spending time together. It’s easy to get wrapped up in the details and focus our attention on the disease and care needs and not the person.  

No. 5 Help Your Loved One Live as Long as they’re Alive

Even if they are not in the late stages of the disease, you can begin to think of ways to continue to engage loved ones with dementia in what they love. That might look like digging around for recordings of old favorite songs that are meaningful to their stories, putting together some family photo albums, packing up fun projects that might be engaging and calming, or planning some choice outings.

No. 6 Call in the Professionals

When it comes to creating a plan for care now and in the future, families are often responsible, but out of their league. Care Managers are eldercare experts and can provide family coaching and ongoing care management for individuals living with dementia. They can help those with dementia find appropriate living arrangements, tailored long-term care solutions, and support engagement in life. For families they can also help them navigate the changes in the disease, and education them on difficult behaviors, communication, and changing care needs. Care Managers are also able to mediate difficult family dynamics to help create consensus and an environment of supportive decision making.  

No. 7 Reevaluate Home

It may be important for your loved one to age in place safely in their own home, or they may prefer to leave a house that is too big or not meeting their needs. Talk with your family about what would make them feel most at home and safe as they face the changes the disease will bring. Deciding what home looks like and means will also help shape care decisions in the future.

You Have Sound Options 

If your loved one has been diagnosed with dementia, the road ahead can seem scary and full of unknowns. Don’t go alone. Here in the Puget Sound region, you have Sound Options for customized Memory Care. Our elite team of RN /MSW Care Managers and in-home caregivers make wherever you call home the safest place to age well. We’re here to support your family and remember you in all the choices ahead. Give us a call to consult today at 800.628.7649. 

Published on July 24, 2015.