After the Diagnosis, What Then?

Posted on May 08, 2015 by Anne Ellett

What happens after the blood tests and body scans and psychometric testing is all finished and the doctor tells you that the diagnosis is dementia? Maybe the diagnosis is Alzheimer’s disease or Lewy Body or Vascular dementia or Frontal Temporal…there are dozens of causes…

With almost any medical diagnosis other than dementia, the doctor is able to give you clear direction on the prognosis and treatment plan.  If you have cancer, if you have heart failure, if you have arthritic joints, you’re handed a name of a specialist – an oncologist, a cardiologist, an orthopedist to make an appointment with and receive your specified treatment plan.  Even when the outcome is dire, there is always some treatment to hold out hope for. 

But with dementia, the 5th leading cause of death in people over 65 years old, there is no prescription or therapy that will hold out hope of a cure for a diagnosis of dementia.  Families go home and are left to ponder what comes next.

In my many years of working with people affected by dementia and their family care partners, I’ve seen so much heart ache and emotional trauma that could have been avoided.  Because the physicians can’t prescribe a curative, or even a stabilizing, treatment, the affected person and their family are left to themselves, to figure out on their own their path on the journey with dementia.

Absorbing the news of a diagnosis of dementia takes some time, but it’s also a call to action.  Hopefully the person receives the diagnosis when they are still in the early stages.  This is the time for a person living with dementia to begin to initiate planning what they want for themselves as the condition progresses. 

Good care for those living with dementia integrates both medical and social care.  There is no magical medical treatment to stave off the dementia, but there are some wonderful options for care, either in the private home, or in a residential environment, that can bring joy and good quality of life. Vague statements like “I always want to stay at home”, or “Don’t put me in a nursing home” don’t really assist in making good plans for the future. 

Receiving the diagnosis is an opportunity to look at your individual circumstances – finances, support systems, and care options.  Do you need to move closer to family? Do you have an elder law attorney who has prepared your papers assigning your financial and health care designee? Have you interviewed local care-giving resources?  Have you visited local memory care facilities?  Which option gives you the best opportunity to maintain your dignity and spirit and joy of living?

Begin to write down your questions and formulate a plan for obtaining the information you’ll need to have a good quality of life through your years ahead.

Posted in Alzheimers, dementia