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Younger Onset Dementia
Posted: Wednesday, March 29, 2017 11:48 AM
Joined: 2/6/2017
Posts: 28

My husband has been having issues the past couple of years.  Just officially diagnosed in January.   He is 61.   He is sundowning already.  Not sure how we are going to make it financially.  This is not something we planned for.  

Posted: Wednesday, March 29, 2017 12:17 PM
Joined: 5/31/2015
Posts: 1159

Welcome Sue, sorry to hear your hubby has been diagnosed.  Is he still working? Has he applied for short or long term disability from work? Has he applied for social security disability?  ALZ is fast tracked for SSD. 

If you haven't already, please get an appointment with an Elder Care Attorney to get all legal paperwork in order to care for and protect your hubby (medical and financial power of attys, living wills, wills, trusts).  The attorney can also advise on Medicaid eligibility for your hubby.  If your hubby is a veteran, check in with a Veteran Affairs Officer as he may be eligible for assistance through them also. 

My DH was diagnosed at age 55...we are 10 yrs into this journey, he is advanced/severe (stage 7) and now resides (19 mos now) in a veterans skilled nursing memory care facility.

Please join us on the spouse and caregiver board.  There are many wonderful people on all these boards to share their experiences and suggestions.  The spouse board folks have been where you are at now and can be very helpful.  This board is great for hearing from persons living with dementia as they impart to us what they are personally experiencing living with dementia.  It gives us insight into what our loved ones daily struggles are.  Many of them also help out on the other boards too.  They are invaluable. 



Jo C.
Posted: Wednesday, March 29, 2017 12:17 PM
Joined: 12/9/2011
Posts: 13608

Hello Sue, and a very warm welcome to you.   I am truly sorry for what is happening and I can understand the significant challenges you must be facing, including the financial concerns you have mentioned; this is one of the primary issues when one faces a Young Onset diagnosis. 

I don't know if you are aware the "fast track" approval for disability benefits for those with Young Onset Dementia through the government's, Compassionate Allowance Initiative; here is a link that provides that information:

There are so many concrete and emotional dynamics surrounding being given a dementia diagnosis, and you have found yourself in a very supportive place where we are all here in support of one another and this includes sharing helpful information.

One thing that may be very helpful in your situation, would be to go to the Spousal/Partner Forum to introduce yourself.  You can find that Forum on the grid where you find the listing of the different Forums where you come onto this site.  The spouses are very knowledgable about  finances, services, assistance, and so much more and many of them are also facing the diagnosis of young onset dementia.  Many of these folks have been  walking this journey with their spouses for quite a long time and are a wealth of information and understanding.

I would also like to give you the contact number for the Alzheimer's Assn. Helpline at (800) 272-3900.  There are no fees for their services.

If you call the Helpline, please ask to be put through to a Care Consultant.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They can be very supportive, have much information, and can also assist with problem solving. 

Please feel free to post as often as you wish; this Message Board and its Forums are where you will be completely understood.  The Caregiver's Forum and Spousal Foums are the most well attended Forums, but you may post your writing wherever you wish.

Warmest wishes are coming your way and we look forward to getting to know you better,


Posted: Monday, April 3, 2017 8:44 AM
Joined: 9/12/2013
Posts: 3608

Sue Lamb -

come back if you like and tell us more.

In particular I am interested in how you communicate with your husband now that he has reached the far end of the illness.

My Dad had ALZ (I do now) and we communicated with our eyes, facial expressions, and body language.  

You both are in my prayers.