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    Dementia-Focused Planning

    Every 66 seconds, someone in the United States develops dementia.  In fact, the number of people living with dementia worldwide is projected to increase from 47 million in 2015 to 132 million in 2050.  These numbers are staggering and will leave many families strained, both financial and emotionally.  Cognitive impairment can result in self-neglect and poor business or investment decisions.  In addition, we often see estate plans turned upside down at the end of life as a consequence of dementia. 

    Health Care Proxies and Living Wills have become a standard part of estate planning.  These medical directives, however, tend to focus on end-of-life decisions – whether to withdraw or withhold life support.  Although these documents are important, they are limited.  The recent rise of dementia in our society illustrates the need to do more.

    Our office has begun to address the limitations of the standard directives with other planning tools focused specifically on dementia and declining cognition.  One instrument we have implemented is the Caring Committee.  Caring Committees help to supplement traditional directives by creating a team generally comprised of a professional care manager, your health care agent, attorney-in-fact, friends, family and financial or legal advisors to ensure your care needs continue to be met as you age.  Committee members work with you to understand your wishes and then work together to ensure these wishes are being followed.

    In addition to Caring Committees, our office has begun to tailor trusts specifically for clients with dementia diagnoses.  For example, we can include provisions requiring that funds be used toward obtaining optimal care in an independent setting as well as limiting the client’s ability to change the ultimate disposition or limiting their direct control in decision making.  This allows clients to build into their estate plans protections against third parties exploiting their cognitive decline.  

    We have also begun to discuss with clients how they want their medical and personal decisions made on their behalf in relation to the onset of dementia.  A recent New York Times Article, “One Day Your Mind May Fade.  At Least You’ll Have a Plan,” discusses another tool to plan for cognitive decline – a dementia-specific advanced directive.  The article discusses the complexities of a dementia diagnosis in terms of planning.  Specifically, it outlines the complications in determining the point at which dementia patients can no longer direct their own care – a much less predictable or obvious threshold than that of the standard used in the traditional directive.  Unlike a standard medical directive, dementia-specific advanced directives can be tailored to the course of the illness.  The proposed directive plans for what can be a very slowly-progressing and patient-specific disease, allowing clients’ goals and preferences to change over time.  By outlining differing stages of the disease and calling for the persons’ main goals at each differing stage, the dementia-specific advanced directive gives people a sense of control over what is often an unpredictable and uncontrollable illness.

    It is important, however, to remember these medical directives, however important, do not replace the need to talk about the potential of cognitive decline.  Ellen Goodman, founder of The Conversation Project, emphasizes the importance of your designated agents understanding what you value and what is important to you.  These dementia-specific advanced directives, along with other planning tools such as the Caring Committee and cognitive decline specific Trust provisions, should be used as a means to facilitate these conversations and to document your intentions for your agents and supports as a reference for when you can no longer articulate such.

    If you have questions on how this topic may affect you, please feel free to contact us at (781) 864-9977.

    To access the full article and sample directive visit :  To read more about the Conversation Project visit:

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