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Planning for the Future after a Dementia Diagnosis: Why Working Together Is Important

By Silvia Orsulic-Jeras | 06/12/2019

A SHARE for Dementia family discussing future plans with a counselor

If we are caring for a loved one who has recently been diagnosed with dementia or a related disorder such as Alzheimer’s Disease, it can feel devastating. Often, families avoid having discussions with their loved one about what the diagnosis could mean for their future out of fear. As the disease progresses over time, we may find ourselves as a caregiver in the position of making important care or health-related decisions for a loved one in a time of crisis, even if we have never previously discussed with our loved one what kind of care they would prefer. As a result, we may feel guilty about having to make decisions on our loved one’s behalf, without prior knowledge of their care values and preferences. 

Research from the Center for Research and Education at Benjamin Rose Institute on Aging shows that planning ahead and having discussions about future care as early as possible following a dementia diagnosis can be one of the most effective ways to reduce these feelings of guilt and stress while ensuring our loved one’s wishes are honored. 
Here are 3 important questions to ask ourselves about our loved one’s care, which can help us plan ahead: 

1. What is most important to your loved one regarding their care?

Having an open dialogue with our loved one about what it means to be diagnosed with dementia, and about their future care needs, is key to preparing for the future.

SHARE for Dementia, an early-stage care-planning program designed by Benjamin Rose Institute on Aging out of decades worth of research, has identified 5 core values for care that most of us find important: 

  1. Independence
  2. Safety
  3. Not Being a Burden
  4. Activities with Family and Friends
  5. Having a Say in Who Helps Out 

Does your loved one prefer to do things for themselves without assistance? Would they rather spend their money how they want and organize their own routines? If so, maintaining independence should be treated as one of your loved one’s most important values when planning their care (Orsulic-Jeras, S., Whitlatch, C. J., Szabo, S. M., Shelton, E. G., & Johnson, J. (2016). The SHARE program for dementia: Implementation of an early-stage dyadic care-planning intervention. Dementia. Advance online publication. doi: 1471301216673455)

If you’re not sure what is most important to your loved one, don’t be afraid to ask. Having these discussions as early as possible can help ensure that we are aware of our loved one’s wishes, and are making the decisions together rather than on our own.  

2. Who does your loved one prefer to help them with their care needs?

As dementia progresses, our loved one may need help with tasks they would have previously performed on their own, such as household activities like cooking, grocery shopping and managing medications. As time goes on, they may need help with more personal activities like taking a shower, getting dressed or using the toilet. It may be difficult for our loved one to accept help with things they used to do independently. However, having some control over who helps out can make the change a little smoother for them. We should ask our loved one who they would prefer to help them with certain tasks. We may be surprised to discover that there are others who can help our loved one, and that all the responsibility does not have to land on us.

3. How much can you handle on your own, without help?

When we are our loved one’s primary caregiver, it often feels as if we are managing every task on our own, and research shows this overwhelming burden can have negative impacts on caregivers including depression, anxiety and illness. If we’re feeling overwhelmed, it may be time to engage other family members and friends to see what they’re willing to help with. There are also organizations within our community that can provide services to us or our family should we need additional help. 

Understanding our loved one’s preferences is one way to support good communication in our relationship with them while gaining important information that will help support us in the future when making decisions on our loved one’s behalf. For more information on resources to help you plan for dementia care, consider contacting a local community organization, like your local Alzheimer’s Association Chapter or Area Agency on Aging.


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