Dear Mary,

My wife is 54 years old and has been recently diagnosed with frontal temporal lobe dementia.  We are a young couple and I have no idea how to plan for her care.  I don’t understand this journey and where it’s going to take us.  I am completely overwhelmed and devastated by this diagnosis.  Can you point me in the right direction?  -Going nowhere in Madison

 

Dear Caregiver in Madison: I am so sorry for all that you and your family are facing.  A diagnosis at such a young age is often unexpected and can feel devastating.  If your wife was diagnosed through a geriatric assessment program, ask to speak with their social worker who can assist in the process. He/she can help you better understand and plan for what lies ahead.   If a social worker is not available, then consider using a private geriatric care manager.  This is a person who is very familiar with the disease process and the healthcare system. However, this is a private cost and may not be an option.

The Alzheimer’s Association offers a free helpline and is familiar with services in the area.  They can be reached at 1-800-272-3900.  One of the first steps I would highly recommend is to meet with an elder law attorney.  It is important that you protect your financial assets, that you have the needed health care appointments, and that you set the foundation for a more secure future for both you and your wife.  It is essential that the attorney be one who has a solid understanding of the laws concerning healthcare and Medicaid.

Support groups can be very helpful for someone in your situation.  The group will introduce you to others who are in your situation and can provide you the support and guidance that you may need.  When looking for a group, make sure that there are others who attend who are dealing with Frontal temporal dementia (FTD).  Some locations offer a group specific to this diagnosis.  Some groups also are more geared for spouses.  Finding a group that works best for you may mean attending more than one. 

Finally there is an organization called The Association for Frontotemporal Degeneration which can provide reading material and resources.  Their website is www.theaftd.org

Please know there are resources that are available.  For information on services available in your area, please contact our community at 203-533-7287.

 

 

Mary Underwood is a leading educator on dementia, her philosophy is reflective of her education, work experience, and first hand caregiving interactions. Working in Memory Care for over 25 years her wealth of experience has led her to develop a Care Philosophy which includes techniques and training models that now are used by families and professionals working or living with dementia or other brain changes throughout the United States.

Mary has served in a wide variety of leadership and advisory positions in professional organizations at both state and national levels, including the Alzheimer's Association. Mary is a board member of CALA and is currently the Senior VP of Memory Care at ARTIS Senior Living.