How Does A Family Even Begin? How Does Family Handle the Trauma of Dementia-Associated Delirium?

America's population is aging and there is an ever-increasing diagnostic rate of all forms of dementia. Sadly, America's health care system is practically inept when it comes to dementia care (or care of the elderly in general). If you have a family member with dementia, it is one of the most traumatic things that can befall your family. However, that doesn't mean you must lose hope. With the right health care team, you can turn this tragedy into a manageable task. It's our goal to give you the right education; tools; emotional support; and respite care to get your family through this difficult time.

Most adults diagnosed with dementia remain at home,* where they are cared for by a family member until the disease progresses to the point it is no longer practical or safe to keep the patient at home. The full-time care of a parent with Alzheimer's can ruin a family's finances. The financial strain tends to force families into a "damned if you do-damned if you don't" situation. Usually, family members end up in long term care facilities, which can cause tremendous guilt for the family.

Unless a family member is used to dealing with dementia, family care givers can be taken by surprise by the actions of their loved one. Most care takers are unaware of the impact social factors have on the care of an elderly patient, particularly if that patient sundowns at night (meaning, their confusion and dementia worsen at night).

First, potential care givers must take their own life plans and finances into account. Keeping a dementia patient at home is an expensive endeavor, though not impossible. Care takers will need a strong social and financial support structure.

Additionally, issues that were never problems before can suddenly become a tremendous moral and/or paranoid barrier to the elderly patient's care. These issues include race; age; relationship to the patient; finance management; gender; and age-related proprieties of elderly patients. Without proper education and preparation, these unexpected personality changes can be overwhelming for care takers (and understandably so!)

As an example, consider a former hospital patient of Dr. Ren's. During the day he was gregarious, boisterous, friendly, cooperative, and always had a joke ready. At night, however, he turned into a different person. His dementia took over and stripped him of all social filters. This man cherished by the day team, was absolutely dreaded by the night team. At 3:00 am we could hear screaming, racial slurs, and sexist comments from his room.

As another example, I've seen frail, emaciated 90-year old ladies spring out of bed and start swinging IV poles with a fervor that would put Babe Ruth to shame. These normally sweet patients could become demons at night, all on account of their disease. These kinds of character shifts are very hard for family to handle. When things get bad, family members often feel they have no choice but to take their family member to the hospital. Unfortunately, the unfamiliar environment of the hospital tends to worsen things further.

There is simply no getting around it: caring for a loved one with dementia is one of the hardest things an adult child can be asked to do. Luckily, there are many techniques which can be taught to care takers, techniques for re-directing behavior and working cooperatively with the patient. This is not education you can find in a hospital. RSHC, however, would gladly come to your home and discuss a treatment plan. Our goal is the same as yours: to keep your loved one at home for as long as possible, while ensuring their quality of life is not sacrificed.

Aren't There Medications to Help Dementia and Delirium? 

Sadly, there are no medications approved by the FDA for the treatment of dementia-associated delirium. The emotional toll of a loved one's confusion, verbal outbursts, wandering, paranoia, and occasional violence (all forms of delirium) are the primary reason family members feel forced to admit their parent (or other affected family member) to the hospital or institution. Yet, this simply does not solve the problem.

While in the hospital, doctors and nurses are left with the same lack of options as the patient's family members; the medical treatment of delirium shames and kills our humanity as much as it does that of the patient's family.

As former hospital employees, RSHC staff were often confronted with dementia patients with delirium, usually caused by avoidable things such as the change of the patient's routine; new medications; buzzers and blinking lights; lack of windows; unfamiliar faces; and other causes that could be ameliorated by behavioral interventions. However, hospitals and nursing homes prioritize profits, which means their nurses, LPNs, CNAs, and MDs are purposefully understaffed. That leaves us - the ones trying to be "good guys" - with two morally distasteful options:

1) Physical restraints (to keep hands tied down so patients don't climb out of bed or yank out IV lines), and/or

2) Use potentially-dangerous medications (the anti-psychotics) to sedate the patient. When this option is chosen, we all cross our fingers and hope it works, because there's a 50/50 chance we'll only make things worse.

What most families don't realize - and that also includes experienced doctors and nurses (thanks to pharmaceutical and administrative pressures) - is that all anti-psychotics carry a standard 'black-box' warning:

"Elderly patients with dementia-related psychosis treated with anti-psychotics have an increased risk of death.”

And yet, ask your nurse or doctor if they know about that, and they probably don't. RSHC has no desire to villainize anyone (except for America's health care system in general), but there are several recent papers citing the careless overuse of these medications among care facilities (particularly in nursing homes).

Why? Well, despite that fact you're likely freaked out by now, the risk of medication-associated death is small, which is why many providers continue to use them, largely out of desperation. A black-box warning is NOT an contraindication to use; a Black Box warning is a reminder that a medication should not be used without extreme caution; discussion with patient/family; and physician/nurse experience.

So here's the rub: Health care providers (and caregivers at home) have extremely limited options for treating dementia-associated psychosis, and when a 90-year old patient is swinging IV poles or threatening the child they don't recognize, we all tend to fall back on these risky medications.

As an example, Dr. Ren was often the only doctor in-house overnight, and nurses often called her when an elderly patient was becoming violent or acting in a potentially unsafe manner. With an incredible amount of admissions coming in, Code Blues, and nurses swamped with work, medication was the only time-friendly option for keeping a delirious patient safe from self-harm (e.g. falling out of bed and breaking a hip). And in nursing homes - where there is not a Type A control freak like Dr. Ren keeping a paranoid eye on things - these medications are used like candy. In fact, Haldol (one of the most commonly used anti-psychotics among the elderly) is jokingly - and tactlessly - referred to as "Vitamin H." These are terms picked up as early as first semester medical and nursing school, which only serves to normalize their careless use.

Here's what we worry about at RSHC: Many care providers -no matter how caring and well-intentioned they are - do not fully understand the potential consequences of these drugs. NO anti-psychotics are approved for treating dementia-associated delirium (actually, NO drugs at all have been approved for this condition). It's our job to educate our clients about these issues. Should the option of medications arise, we will discuss them with you, talk about pros and cons, and ensure there is no miscommunication about a medication treatment plan. We also remain in house to ensure patients handle medications without significant side effects. We won't leave you - or your loved one - alone as we try to find a behavioral and medication regimen that works, and works safely.

If Medications are Limited, How can RSHC Help Us Keep our Loved One at Home?

The complications of dementia are simply one of many reasons we at RSHC are trying to bring back house calls. As we get to know your family, we can teach you non-medical interventions for the behaviors that often overwhelm caretakers. That doesn't mean medication won't sometimes be necessary, but we will treat it only as a last resort and only under direct physician/nursing supervision.

All providers at RSHC have worked extensively with elderly populations and we've all seen the utter devastation of families and family members who must deal with an ailing parent or parents. Sadly, many dementia-related behaviors tend to land patients in the hospital, simply because it is understandably overwhelming. This also causes considerable guilt for many people, and it doesn't have to be that way.

Health care providers are notoriously bad at teaching non-pharmacological techniques for dementia management to residents and medical students, yet alone patients and their caretakers. That's how we will help you: We will teach you ways of dealing with dementia behaviors in healthy and helpful ways, after we complete a thorough examination to rule out conditions that may have been misdiagnosed as dementia, as discussed here.

Don't Forget: When it Comes to Dementia, There is More Than One Patient! Caregiver Burden & Burnout are Real Events.

Let's briefly discuss the health of the average care taker. Unfortunately, multiple studies have looked at the the emotional & physical toll that dementia care givers must confront. Virtually all studies* indicate increased depressive symptoms among caregivers, with markedly high rates of depression and anxiety. This surprises no one; caring for a demented family member is a stressful job!

Specifically, the degree of caregiver depression was directly correlated to the severity of: the patient's behavioral problems; available income; stress levels; and perception of life satisfaction. In regards to physical symptoms, caregivers showed a decline in physical health while caring for dementia patients. This decline was more pronounced if the patient had advanced cognitive decline or significant behavioral problems.

Data from the National Alliance fro Care-giving* estimated nearly one-in-four US households (who participated in a telephone survey) had at least one caregiver living in the household. This translated to over 22 million caregiver households at the time of the survey. More than 20% of the households verified that one or more people in the home were caring for a person with a dementia-related illness. According to their report:

"Nationwide, this translates into more than five million households providing care for some one with dementia or related symptoms."

How Does Family & Caregiver Counseling Help? 

Family caregiving is an integral part of the care system for persons with dementia.

This study tested role-training intervention as a way to help family caregivers appreciate and assume a more clinical belief set about caregiving and thereby ameliorate the adverse outcomes associated with caregiving.

There was a significant positive association between the strengthened mediator, the caregivers' having less-emotionally enmeshed beliefs about caregiving roles and responsibilities, and the outcome, namely improvements in burden and depression A caregiver training intervention focused on the work of caregiving and targeted at knowledge, skills, and beliefs benefits caregivers in important outcome dimensions. The results suggest the benefits of providing information, linkage, and role coaching to dementia family caregivers.

What Will Education & Counseling Sessions Include?

We take a multi-factorial approach to helping families navigate this difficult issue. Our basic program steps include the following (not necessarily in this order):

  • Family education with a focus on learning self-management skills, disease education; social support; and health maintenance issues.
  • Discussions regarding home safety.
  • Medical care for the patient.
  • Counseling and support for caregivers.
  • Respite care (meaning, we can come watch your family member while you have a chance to get out of the house).
  • Teaching approaches for alleviating behavioral problems in dementia.
  • Comprehensive exam and lab testing of the patient with dementia to ensure another diagnosis was not missed (e.g. thyroid problems; stroke; metabolic encephalopathy; and other conditions that mimic dementia).
  • Creation of a family-approved plan for managing supportive measures such as nutrition, hydration, and management tips.
  • Initiation of medications (when appropriate) and medication review.
  • Routine psych screening for monitoring of disease progression.