Living well with dementia: The benefits of early diagnosis

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One response to “Living well with dementia: The benefits of early diagnosis”

1. 

   September 20, 2016

   Mindy Machanic, Ph.D.

   There are many disadvantages to early diagnosis of Alzheimer’s or other dementia, as well as the few benefits you named. There is still great stigma against people with dementia, over and above existing stigma against older people and people with mental illness. And not all of us live in a family situation; a person alone facing such a diagnosis has additional issues and problems to deal with. They must balance needing to plan for the future with being able to manage their own affairs on the way down.

   For all, besides grief, there may be shame at becoming “less” on the part of the person with the diagnosis. Depression and irritability are not unreasonable reactions to current and future problems the person diagnosed with dementia encounters or knows s/he will experience, but also to how others react to that diagnosis, no matter how minimal the current symptoms.

   If it becomes known beyond the immediate circle that the person has a dementia diagnosis, any minor infraction of social expectations or legal protocols is likely to be judged more harshly than for “normal people”, and in some places and situations, could end with the person with dementia being subject to more restrictive or punitive outcomes than would otherwise be the result; it is even possible to lose certain rights and privileges as a result of stigma, even if the dementia is pre-clinical or in early stages. Judges are likely take the word of whoever brings the case, no matter what the “demented person” says about their situation, as is often the reality for mental health cases.

   It can also affect things like insurance rates, or even the ability to get new insurance. Electronic Health Records (EHRs) have not helped protect patients with a diagnosis of any form of dementia, even Mild Cognitive Impairment (MCI); because they follow the patient. A person with early signs or diagnosis of dementia may not want that in the chart, but the physician who might agree during the office visit not to put it in formal records goes ahead and includes it with lab test and referral requests.

   Physicians requesting testing for related or unrelated medical issues, or referrals, etc., do not think about the possibility that the diagnosis on anything in the chart carries weight of its own, that it will be seen by other healthcare providers who have their own ideas and stigmas about people with dementia and how they should be treated (whether based in current best practices or on their own stigma and preconceptions), and because it will be seen by the non-medical people associated with the practice or clinic or hospital who do the billing and collections, etc.

   There is really no such thing as a private healthcare record! And a diagnosis being in a chart is forever. Even though HIPPA says a patient has a right to have things changed or removed, providers and organizations interpret it differently, and with advice of their lawyers, often refuse to remove or change anything, even with additional updated information from their own providers. They may agree to supplement the record with explanatory or alternate documentation, but they may not.

   Once a dementia diagnosis is known to others, any little slip of memory or stumble of words is reason to trivialize the person, and someone slow to decide things like what they want for lunch in a restaurant is likely to bring on irritation or even rudeness from servers or people in line at a counter. People with good intentions will say, “tsk, tsk, so sorry” to the person, “so sad” to friends and family, and then walk on eggshells – or avoid them completely if possible. Sadly, it can also be the case within the person’s own family, even resulting in emotional or physical abuse, or abandonment.

   My suggestion is if you suspect you might have very early symptoms of dementia – before you officially get that early diagnosis – or if you know you are likely to have a high familial risk for it and are nearing the age when your relatives began (in retrospect) to show signs of it – do your research and make some plans for what you want in terms of living arrangements and such, and put in place some (witnessed or notarized) documents that express your wishes for how you wish to live (i.e., in your current home, or move to a senior community, if you want to move to Assisted Living when you need to do less of managing and caring for things in your home or have daily in-home care assistance; how you want to be treated while you are still capable of managing your daily life, and what you want for help when you are incapable of functioning without daily assistance), both for legal and financial aspects and for Activities of Daily Living (ADLs).

   This kind of planning is one of the things you need to do but may not be able (allowed) to do after a diagnosis of a dementia is in your record. It depends on local law and custom as to who decides when you are incapable of making those decisions, and you won’t be able to override them without a major battle, if at all.

   There are organizations and websites that have booklets and articles and related forms you can customize to create the appropriate documents. You can start with the links above or run a search online, or at your local library, or through your local Area Agency on Aging to find info and forms.

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