Mental Health Care: Too Often an Afterthought with Dementia and Alzheimer's Patients
Mental health care seems to be afterthought or downright ignored in our healthcare system. Yet, mental health services and expertise are essential components in a care plan for patients with dementia and Alzheimer's disease.
As these conditions progress, it's quite common for personalities to change. People who were once kind and gentle may become angry and aggressive. Caregivers may find themselves at a loss, trying to identify the mental health services that their family members need. I found myself in this situation as my Dad's dementia advanced.
Wandering Through the Mental Health System
In addition to his dementia, the stroke my Dad experienced after his heart surgery affected the part of his brain related to emotions. Dad would cry at the drop of a hat, often for no clear reason. Initially, my father's primary care physician referred us to the behavioral health team at the practice. We met with a behavioral health counselor once a month for "talk therapy" and she managed the anti-depressant that my Dad started to take. While it was helpful to have a connection in the behavioral health department, our specialist had no particular expertise with geriatric populations or with dementia patients.
Once my Dad moved to memory care assisted living, I was happy to learn that there was a geriatric psychiatrist who visited patients at the facility. She had the specialized knowledge needed to prescribe a different medication to address Dad's crying. Then one day, she simply stopped providing that service. We were back to having no mental health services, since the memory care assisted living couldn't find another specialist to visit the residents.
Over time, of course, my Dad's dementia got worse – he began crying uncontrollably on a daily basis. Then he got angry and aggressive one day, telling me that I'd ruined our family. The memory care assisted living felt they couldn't handle him anymore. My geriatric care manager advised that no skilled nursing facility would accept my Dad in his current state. She recommended that the best path was to get him an inpatient geriatric psychiatric evaluation. And the only way for that to happen was to go to the ER…
Dementia and Alzheimer's Patients and the ER…
The process of getting my Dad to the inpatient psychiatric evaluation and eventually released to a very good skilled nursing facility is one that haunts me to this day. The Psych Department at the local hospital ER was a shock. My Dad, with his lack of insight, had no idea why he needed to be there. He was crushed, feeling like we'd betrayed him.
In my naivete, I was floored when I realized had to lock up my belongings before going to visit him. We could hear other patients screaming like animals in other parts of the ER ward. I felt overwhelmed and in one of the darkest times of my life ever.
We had the misfortune of having this incident occur on a holiday weekend, so my Dad was stuck there in the ER for days while they tried to find a bed in a geriatric inpatient facility. The staff did the best they could, but they had no expertise or knowledge about the behavioral health issues facing dementia and Alzheimer's patients. I desperately wish that there had been a better and less traumatic path to get to the inpatient geriatric psych evaluation.
Unfortunately, the ER seems to have become the way to get patients of all types to the mental health services they need. The Agency for Healthcare Research and Quality (AHRQ) reported that between 2006 and 2014, the rate of mental health related emergency department visits increased 44.1%.
AMITA Health, a health system in the Chicago area, has created a centralized call center which has access to information about beds in all its behavioral health units. Crisis workers in the ER can call one number and most patients that need behavioral health interventions are placed within about one hour. A similar model would have been so helpful in my Dad's situation
Thoughts For Caregivers…
Based on my experience, I'd offer three suggestions to caregivers with a parent suffering from dementia or Alzheimer's disease:
Start a dialogue early about behavioral health services. I'd encourage you to have a conversation with your family member's primary care physician about the mental health part of the equation. Behavior changes are such a common aspect of dementia and Alzheimer's, it's not a bad idea to start thinking early about what kind of mental health support you can put in place.
Seek out geriatric psychiatric specialists. If at all possible, try to find psychiatric specialists who have expertise with geriatric patients, as well as with dementia and Alzheimer's. In the years ahead, the demand for this medical specialty, as well as geriatricians more generally, will grow as Baby Boomers age.
Talk with primary care physicians and mental health specialists about how to deal with mental health crises. No one expects or wants a health crisis – but they arise nonetheless. I'm not sure how I could have prevented my Dad's ER visit and I find that both sad and frustrating. In retrospect, I do wish that I'd had a proactive conversation with his medical team about what to do when a behavioral health emergency arose.
If I could convey one message to the medical community, it would be to make the path easier for dementia and Alzheimer's patients to get psychiatric evaluations and medication management. It's just one of the many gaps in our mental health care system that needs to be addressed.
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