Mental Health Misdiagnoses: Are You Really Seeing Dementia?

Elderly woman smiling as she works in her gardenYour client has been to their primary care provider (PCP) and hesitantly described being tired, sometimes forgetful, and increasingly short-tempered. They may have difficulty functioning at work or getting along, and they are isolating themselves in their room or home, causing concern in the family. The doctor completes the exam and sends the client to you. The suspicion is that this is depression.

Why would the doctor’s thought process go there? Your client may be midlife or a senior, there have most likely been some changes in their life recently, and they were previously highly functional. The client comes to their first appointment with you feeling like something is wrong, but they don’t think this is depression. Or maybe it does, but there’s something else. They may be upset the doctor would send them to a therapist in the first place.

Keeping Dementia in Mind

As you begin your assessment, you remember that you have been told this client may be depressed. This is my challenge to you as a mental health provider: think outside the box. Outside the diagnosis. Outside the age. Dementia is one of the fastest growing public health problems worldwide. It is not an issue or disease of the elderly—it is growing in those at midlife. And it is frequently misdiagnosed, causing the client and family frustration, anger, and mistrust of both the medical system and mental health providers.

According to Alzheimer’s Research UK, there are currently 50 million people worldwide living with dementia. That number is projected to grow by 204% by 2050. In the general population over age 60, we know 5.2% are currently impacted by dementia. Keep in mind those numbers only reflect the patients who are correctly diagnosed. Those numbers should shake all of us. As mental health providers, they are saying that we need to be ready to do a correct differential diagnosis and be on the lookout for dementia, beginning with clients at midlife.

Your assessment always includes family history, both medical and mental health (at least I hope it does). Are you asking about memory loss and dementia-like symptoms in parents and grandparents? If the client is having trouble with friends, family, coworkers, or social situations, are you listening with a third ear for symptoms that don’t quite fit? Is your client tired and forgetful although they get enough sleep? Did you ask about appetite? Dementia causes loss of the sense of smell early in the disease, which can result in loss of taste. Is your client not hungry or simply not wanting everything to taste wrong? Do they report that sweets and salty foods are awesome, but lobster is now no longer tasty?

Types of Dementia

Forty-five percent of doctors polled recently said they do not tell their patients when they have dementia.

Mental health providers are not neurologists, but we can educate ourselves about dementia and become more aware of its symptoms. We need to know the major dementias:

  • Alzheimer’s disease (It’s just one, not the only one.)
  • Lewy body
  • Frontotemporal dementia
  • Chronic Traumatic Encephalopathy (the football and soccer player’s disease)
  • Vascular (It can start with just one stroke.)
  • Parkinson’s-related dementia
  • Wernicke-Korsakoff (known more commonly in those affected by late-stage alcoholism)
  • Late-stage syphilis
  • Creutzfeldt-Jakob disease (mad cow disease)
  • Mixed dementia

Those are the major players, but there are others that are rare and more likely to be correctly diagnosed due to a clear family history. All of them present differently, but all have similarities. Most important for all of us, they can all look like mental health diagnoses and may be easily mistaken.

It takes an average of three to five specialists for someone with Lewy body to be correctly diagnosed. This process can take years, while the illness generally lasts only 5 to 8 years, according to the Lewy Body Dementia Association. The other dementias can also be easily missed initially. On top of this is a startling number—45% of doctors polled recently said they do not tell their patients when they have dementia. They feel helpless, and they know dementia is a terminal illness, one many people are frightened to hear they have. That leaves patients and families struggling to understand what is happening. Clients may come in feeling blamed for not trying hard enough or being too hard to be around. Families may come in frustrated, upset, sad, and having trouble coping.

When Dementia Is the Diagnosis

What does that mean for us as therapists? This is not something we can assume doctors will correctly diagnose. We are trained listeners. We have time in our appointments that medical providers do not. We can, with permission, assess with the family participating. We can be the professionals who help clients and families understand what they may be facing, provide treatment plans to help them prepare for what is coming, and refer them to the right neurology providers with an assessment that includes a request to look at dementia as a possibility.

If you or a loved one are struggling with a suspicion that there may be dementia in your family, reach out to a mental health professional. There are therapists who specialize in dementia, and they will work with you to do a complete assessment and to get you to the right support systems. These may include support groups (I offer one in my local community monthly), online education and support, neurology, a teaching hospital, or a geriatrician.

Facing dementia is not something that should happen alone. A therapist can and will support you and your family and provide a safe place for you to learn better coping skills, to work out family issues as they occur, or just to have a place to vent.

References:

  1. Diagnosis. (n.d.). Lewy Body Dementia Association. Retrieved from https://www.lbda.org/go/diagnosis-0
  2. FTD misdiagnosis. (n.d.). UCSF Memory and Aging Center. Retrieved from https://memory.ucsf.edu/ftd-misdiagnosis
  3. Global prevalence of dementia. (2018, May 7). Alzheimer’s Research UK. Retrieved from https://www.dementiastatistics.org/statistics/global-prevalence
  4. Sauer, A. (2017, May 1). Alzheimer’s diagnosis rarely disclosed to patients. Retrieved from https://www.alzheimers.net/4-13-15-alzheimers-diagnosis-rarely-disclosed

© Copyright 2018 GoodTherapy.org. All rights reserved. Permission to publish granted by Jill Johnson-Young, LCSW, therapist in Riverside, California

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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