Supporting a Loved One Recently Diagnosed with Dementia

Insights from Aging Well Eldercare owner Susy Murphy

Supporting a loved one with dementia can be one of life’s most challenging experiences. You cannot overlook the toll it may take on you emotionally or financially ― especially without proactive planning. To help families facing a recent diagnosis, we spoke to Susy Murphy, the owner of Aging Well Eldercare, who has helped hundreds of families during more than 30 years serving aging adults. Before we share her insights, let’s consider the impact of this life-altering diagnosis through one personal story.

Margaret’s story

When both of their sons had graduated high school, gotten into college and shown themselves capable of becoming hardworking, responsible adults, Margaret Jacobs and her loving husband, Tom, were finally able to step back and relax a bit ― the result of many years of hard work professionally and at home, and the stresses (and joys) that accompanied it.

Unfortunately, this reprieve was short-lived. Within months of their youngest son leaving for college, they received a long-sought explanation for the deteriorating health of Margaret’s mother: dementia, specifically vascular dementia, which may have begun as much as a decade before her diagnosis.[i]

Margaret summarizes the financial, emotional and logistical ramifications that followed with one word: a nightmare.

Her parents lived in Florida, thousands of miles from their children and grandchildren. Her father remained in excellent condition and therefore insisted on caring for Margaret’s mother himself. Then came the hardest part: the heartache of having her mother at times forget who she was and the lifetime of memories they shared.

As Margaret reflects on life since the diagnosis, she wonders what she and her family could have done differently. She worries about her father ― the toll that being his wife’s caregiver is taking on him and the heartache he suffers as he watches her deteriorate. She also worries about her parents running out of money and needing to move out of the home they love, should the cost of care for her mother exhaust their savings. Mostly, she sounds exhausted as she continues to muster the strength she needs to help her mother and the rest of her family through this painful journey.

A familiar story

Unfortunately, Margaret’s story is becoming all too familiar, with the total number of elderly Americans with dementia expected to rise from an estimated 7 million in 2020 to more than 9 million by 2030 and 12 million by 2040.[ii]

Murphy and her team of care managers, who describe themselves as the “wedding planners for aging well,” seek to articulate the joy you can still find during the later stages of life and the personalized care that elders deserve. Members of the Aging Life Care Association, they have backgrounds in nursing, social work, gerontology and physical therapy, and they offer not only experience, but also an uplifting approach.

Here are some insights Murphy shared during our conversation with her:

• Each dementia journey is unique.
  
  It is important to note that there are different types of dementia. Murphy likens it to a fruit ― a category with many varieties. Alzheimer’s is the most common, followed by vascular dementia, but there are many more, and someone can be diagnosed with more than one dementia disease process. This means that the experience of someone you know who has dementia or has cared for someone with dementia doesn’t necessarily correspond to your situation, even if they have the same type of dementia. Keeping this in mind can help you digest the stories and advice others share with a grain of salt.

• The window opens and shuts. 
  
  People tend to think about dementia as a closing window, which isn’t the right analogy. It’s usually more like a window that both opens and shuts ― especially in the earlier stages. Like anyone, those with dementia may have a much better day following great sleep, a healthy breakfast and exercise, relative to a day that begins with poor sleep, a less nutritious meal or other unfavorable conditions. The difference for those with dementia is that their bad days are much worse. Murphy recommends appreciating the good days and not losing sight of the positive impact good health habits can continue to have.

• Education helps you prepare.
  
  Education is an important first step toward learning the best ways to support your loved one and yourself. If you’re working with care management professionals, such as those at Murphy’s Aging Well Eldercare, they will likely have many resources they can share with you. These may include new tools and technologies ― for example, Murphy recommends an immersive experience that allows family members and other caregivers to experience firsthand the profound effect dementia has on daily life, from processing and cognition to relationships and emotional well-being. Another example is a behavioral assessment tool that Murphy uses, which helps families normalize their family member’s behaviors as being appropriate given their stage of dementia, recognize changes in behavior as a sign of the disease’s progression, understand their loved one’s current level of decline and identify next steps for their care.

• Referrals from friends and family aren’t always the best way to find the right community.
  
  Families often select memory care facilities based on referrals from friends and family. But this strategy often doesn’t result in the right fit. A better plan is looking for places that align with your loved one’s preferences, backgrounds and interests. For example, in the Washington D.C. area, where Murphy is located, certain facilities tend to have a high population of retired professors and CIA professionals, offering a community of shared interests and experiences. Details about the space, staff and programming also matter ― just like when planning a wedding. That’s why touring the community to get a sense of whether it’s the right match for your loved one is crucial.

• Acting earlier protects both you and your loved one.
  
  Families commonly wait to seek help ― for example, with additional in-home care services or finding a memory care facility ― until it becomes abundantly clear that doing so is necessary. But this often means waiting too long, until something dangerous happens or a family caregiver has completely burned out.
  
  Identifying the right time, much earlier in the journey, with the help of your medical and care management team can avoid this outcome and better protect your loved one.
  
  Acting earlier to protect your loved one’s finances and legacy is also important. This means working collaboratively not only with caregivers but also professional advisors, including a financial planner and attorney, to help your loved one implement, review, and change estate planning and other financial plans as necessary, including (but not limited to) their:
  • Power of attorney
  • Medical directives
  • Will, trust and other estate planning documents
  • Medicare selections
  • Beneficiary designations
  • Account titling 
• Murphy stresses the importance of professional financial advisors working collaboratively and proactively with care management providers, which she credits as being an important component of her team’s success.  

• Take care of yourself first.
  
  This piece of advice supersedes all others. If you burn out ― emotionally, physically and/or mentally ― you can’t provide the support your loved one needs. Murphy has observed spouses run themselves ragged, even to the point of death, when they understandably but counterproductively insist on remaining their loved one’s primary or only caregiver. She stresses the importance of your own rest, exercise and nutrition, and of putting your loved one first by putting yourself first. She reminds families that quality of time matters more than quantity.

• Enjoy your loved one.
  
  Murphy also provides hope as she recounts her experiences serving those with dementia, with stories that demonstrate just how rich your time left with your loved one can be. She suggests looking for ― and expecting to find ― joy in your time left together. This often includes simply living in the moment together better than you were able to pre-diagnosis. It also includes periods when the window opens and your loved one’s restored memory brings unforgettable joy to both of you.

Lean On Us

We are here to help you. We can connect you with resources, including local care management solutions, and will work collaboratively with other advisors and care management team members to help you protect your loved one, their legacy and your well-being.

[i] Swaddiwudhipong, Nol, David J. Whiteside, Frank H. Hezemans, Duncan Street, James B. Rowe and Timothy Rittman, “Pre-diagnostic Cognitive and Functional Impairment in Multiple Sporadic Neurodegenerative Diseases,” Alzheimer’s & Dementia, May 2023; 19: 1752–1763, https://doi.org/10.1002/alz.12802.

[ii] PRB, Fact Sheet: U.S. Dementia Trends, https://www.prb.org/resources/fact-sheet-u-s-dementia-trends/. Accessed July 19, 2023.