Younger people with dementia are “the exception to the rule”. There are so few younger people with dementia that are accurately diagnosed, especially in rural areas, that there is little to no specialty care directed at the specific needs of younger people with dementia. It is easy in these circumstances for an individual to “fall through the cracks” of the medial system. For example, while there are many specialized services for older (geriatric) patients with dementia – adult day settings, special units on a nursing home, medical teams specializing in dementia – these services are not always appropriate nor do they meet the differing needs of younger people with dementia.

On the other hand, many of the services provided to individual with traumatic brain injury are very appropriate for younger dementia patients. However, because of the degenerative nature of dementia, brain injury facilities cannot treat them because a dementia diagnosis does not fall under their definition of brain injury.

Also consider that for geriatric patients with dementia, it is generally a “medical” condition. However, younger people with dementia can be treated as a “psychiatric” patient. While the psychiatric professionals are well-equipped to deal with behaviors such as confusion and agitation, they are not always well prepared to deal with complicated medical issues such as an evolving stroke condition (multi-infarct dementia), nor with the degenerative nature of dementia.

What to do:
 

• Stay informed about the medical decisions being made on your/your loved one’s behalf. Find a friend who is works in the medical field who can answer questions you may have. Ask for a patient advocate from the hospital.
   
• Look into case management services. Talk to your insurance company to see if this is a benefit provided. A case manager can assist in navigating the health care system and may offer options for care that you have not thought of yet.
   
• Don’t be afraid to ask for services you think you/your loved one needs. The worst that someone can say is no, and they may say “Yes”!
   
• As long-term care comes into play, stay involved! Provide the professionals with all the information you have and ask them to do the same. Set up regular meetings or phone calls to get updates on status/progress. Make your positions on decisions clear; if you feel uncomfortable about a particular treatment or placement, let someone know.

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