Hard Conversations: When to Recommend a Long-Term Care Facility

With 16.1 million families, friends and other non-professional care partners in the U.S. providing for individuals with Alzheimer’s or another form of dementia, a clinician needs to be aware not only of the symptoms and condition of the patient, but also the impact that patient care presents to those surrounding someone they love—while they watch them deteriorate daily from an advancing, highly-destructive disease. The question becomes how to recognize when they need help beyond clinical advice in the exam room.

There’s no denying that friends and family play an essentially vital role in Alzheimer’s care. Care partners have provided an estimated 18.4 billion hours of care, valued at over $232 billion dollars. That’s a burden alleviated from our already over-stressed healthcare system and it provides care to patients from those that can offer love, familiarity and trust; all critical to reinforcing dementia patients with a sense of security and calm. Care can also be provided by care partners in the familiar and comfortable environment of a place the patient considers home.

But while this level of care can be the best for the patient, it’s no longer sustainable if the pressure on friends and family becomes too great. Providers of care can often come from what’s known as the “sandwich generation,” where they must raise children in addition to providing Alzheimer’s care. A provider must evaluate if a patient’s loved ones are at a point where the strain of providing care is negatively impacting their own health, and if all involved—patient and family—would be better served if the patient is transitioned to a long-term care facility.

A Decisional Roadmap for Long-Term Care

Counseling care partners on when to move a family member into a long-term care facility is not easy. But there are observable triggers and guidelines to follow that can help make that important decision when it’s best for both patient and family.

Aggressive activity

One clear indication that it’s time to shift Alzheimer’s or dementia care from home to a facility is the development of violent or physically aggressive behavior. Is anyone’s safety at risk? Pay close attention to the entire sphere around the patient. While there may be obvious risk to self-harm from the patient or risk to the care partner, is there risk to anyone else in the home, even if that person is not directly involved in care? This can include children and even a guest that is just visiting the home while the patient is present.

Aggression is also not limited to the physical. If the patient has become verbally or emotionally abusive to anyone in the home, there is only so much “patience” that can be extended by those around the patient. Even though unintentional due to their condition, patients abusing their families is an issue that must be taken extremely seriously. There are Alzheimer’s support groups that can help care partners to understand that aggressive activity is not their fault and not directed at them. But you need to help friends and family determine where the line exists (and there must be a line) that says enough is enough.

Conditions that escalate Alzheimer’s care needs

Alzheimer’s and many other forms of dementia are progressive. With the patient’s decline in cognitive abilities comes an increase of erratic and debilitating symptoms. Behaviors such as wandering will increase the need for vigilance on the part of care partners, such as installing new locks and increasing the amount of time spent with the patient. Symptoms such as sundowning can increase aggressive behavior during the evening hours—right when most people expect to have a period of calm and relaxation after a busy day. Eventually, the progression of Alzheimer’s care will require help with even the most basic tasks of hygiene and care. Friends and families will need assistance in determining when the level of increasing care, and the increasing stress that goes along with it, means that it’s time to move to a long-term care facility.

Evaluating the impact on care partners

Stress is unavoidable when it comes to Alzheimer’s care, so how much is too much? There are certain behaviors to look for and inquire about on the part of care partners to gauge how they are dealing with the stress. These include a state of hyper-vigilance when caring for the patient and obsessive worry/intrusive thoughts about what could possibly happen to their loved one as the disease progresses. You need to also consider not just the impact of the emotional worry, but also sleep and eating disruptions that can occur when caring for a patient. And the closer that a care partner is to a patient emotionally (such as in a spouse or child of a patient), you can expect the stress level to go even higher.

Ask a care partner often about how they are handling the stress. Pay careful attention to stated feelings of isolation, anger or resentment, as these may be signs that the care partner needs help.

Evaluating all the options

The care partners that surround a patient need to know that they have options and many decisions to make beyond whether or not it is time for long-term care. There are many options for Alzheimer’s care facilities available, and patients and families need to plan ahead while the patient still has the cognitive ability to make sound decisions regarding their care. Fear of separation and not being able to personally monitor care 24/7 are common among care partners. If they know that a loved one is going somewhere that provides a supportive, healthy and nurturing environment—one that provides highly-skilled expertise in dealing with the patient’s condition—it can help alleviate many of these anxieties.

You should also counsel care partners that there are options beyond the binary choice between Alzheimer’s care facilities and full-time, at-home, family-based care. There are many Alzheimer’s support groups available that provide an environment of professionals and other care partners that know what the friends and family of a patient are going through. They can educate care partners on what to expect and how to deal with it. They can also make sure that they are aware of all the dementia and Alzheimer care resources available, as well as emotional assistance for the care partners themselves.

“Respite care” is also a temporary option to enable care partners to step out of their current role and focus on other aspects of their life, including friends, family, and simple time for themselves. Rest and a break from providing care are essential for the friends and family of a patient. If they get to a point where their only role in life is to care for the patient, that’s probably the point when it really is time for long-term care.