“I Want to Go Home!” Meeting the Challenge of Placement for Loved Ones with Dementia

Dawn Elledge RN, CCM, CGCM is an independent board certified geriatric care manager who practices expert elder-care coordination services in middle TN. Dawn helps families care for and/or cope with loved ones with dementia. Dawn is also a dementia educator as well as dementia care-giver support group facilitator.

When was the last time you stepped into an Assisted Care Living Facility and saw someone at the door stating he or she wanted to go home. “I want to go home!” Every time I hear someone with severe cognitive impairment stand at the door saying how they want to go home, it always makes me so sad. But it is also very real. There is so much more going on there. While I do want to address the issue of placement in regards to finding somewhere a loved one suffering from dementia can be cared for safely, let’s digress first, and take a closer look at the issue of “wandering,” which is also in the mind of a dementia patient, “wondering” where they are. Wandering or wondering, getting lost and not knowing where they are can happen in any stage of dementia. Think about it. The reality of not knowing where you are, or where you think you need to be is one of the most difficult issues facing someone who has impaired memory, as it is for those caring for them. In fact, most of the clients that have asked me for help to find placement for loved ones with dementia has been on this very basis. In other words, most Americans care for loved ones with dementia at home. Some care-givers who are able to afford the cost of a facility through out of pocket means or through a long term insurance product, have waited until the issue of wandering became a game-changer! Sometimes facility placement happens due to an escalation of certain behaviors or frailty associated with dementia, which is progressive. However, when a loved one begins to wander off, or wonder where they are, “elopement” concerns erupt. And they erupt fast when they do. It may seem to those of us who are on the “outside” looking in, that these sweet souls don’t really know what they are saying. But do they? Research indicates this varies from one case to another in different degrees or phases, and during the mid stages of dementia, the brain may have lapses and it may have moments of maintenance. Do loved ones with dementia know where they are, at all? We may never really know- in detail. We do know the memory center in the brain is dying, thus memory is the issue. Imagine, you cannot remember or you wonder where you are right now? No one has ever lived to tell about this nightmarish experience. Most facilities have locked units or “Memory Care Units,” where loved ones are placed who suffer significant impaired memory or memory loss. Sometimes these units are also referred to as Special Care Units or “SCU’s.” For these loved ones who are newly transitioning to these units in a community type setting, it is not always easy to get “accustomed” to the new surroundings, and it is natural for particular residents to seek a door, triggered by other people going “in and out….” That’s where a highly trained staff in the area of memory loss is to be expected, and who are accountable!

I know, none of this is very pretty to speak of, but the good news is, that each part of the journey in dealing with dementia objectively, tends to come and go. For some people, certain behaviors may last longer than with others, however, all of the behaviors have peaks, falls and disappearances; remember, this is the brain we are talking about. Like cut or damaged cable wires, the pathways to normal processing are all interrupted by those tangles and plaques- what thieves these are! If the person with dementia wants to leave to “go home” or “go to work,” it is gut wrenching for family members of loved ones suffering memory loss to hear this. When finding the appropriate placement for a loved one suffering dementia, we need to educate ourselves more on the disease itself, and take a much closer look at the reality of dementia, and learn ways in how best to cope as a care-giver. No matter if you are a loved one and personally caring for someone with memory loss or you are a professional care-giver, knowing what is going on inside the brain of someone suffering memory loss is crucial, while knowledge also helps caregivers to deal with, cope, and care for these precious souls. Knowledge is power, and empowering caregivers is key!

Here’s the fact of the matter. Persons who lack the ability to make clear decisions for themselves or who cannot remember who they are, or who they were, let alone who we are, need others to help them in daily activities. It may be as simple as cueing someone to get a bath, dress and eat, while for others it’s a fiasco. In the art of being a “dementia whisperer,” it is important to “join those with dementia, in their journey!” It is just so much more easy to validate someone who asks to go home versus argue with them, or try out some form of “reality orientation.” Distraction often times works wonders! Besides, “reality orientation” is dependent upon one’s reality. As a former VUMC post trauma neuro nurse, we used the common forms of assisting patients with traumatic brain injury or post cerebral vascular accidents, etc., to find their way back to the present time, place and persons, so to speak. Not to say, that in the early or middle stages of dementia, using a bit of reality orientation is a bad idea, though. The point is, dementia is progressive. The need is for safety and protection- not for attempting to bring back a loved one with dementia into to our reality. That’s a hard fact. Those suffering with moderate to severe memory impairment need only a warm, safe, familiar environment. Interestingly, the most beautiful and common things in life on planet earth can bring peace and joy- if even for one moment of time, to those suffering from memory loss. Babies, puppies, cats, dogs, flowers, cookies, sunshine, music, Scripture are all examples of things I have witnessed first hand, over the forty years in my career, bring a smile to even the most severely demented human. Triggers. Triggers are like memory markers. They are highly individualized and so unless you are very-very familiar with someone, it’s hard to say what triggers someone’s demented brain- bad or good. But triggers are real, too.

Wherever we decide to “place” a person with dementia, outside the family and/or home environment, we have to ask a few questions, in advocacy for the person being placed. Let’s look at a few of these questions:

  1. What fall prevention methods are utilized if we’re looking at facilities.
  2. Also, if we’re looking at a facility, what memory care techniques are used; Teepa Snow- Beloved O.T. who teaches hands-on methodology for better outcomes. There’s the Montessori method that engages the senses, or the Snoezelen method that engages those suffering from memory loss with a multi-sensory environment. I have always been a fan of the person centered approach that creates feelings of belonging for those suffering from dementia.
  3. Are the latest trends that focus on the issue of depth perception, impaired vision, and Eden approach being factored in the facility?

Ideally, we all need to belong somewhere. The more we can be where we seem to fit and others around us seem like they fit, too, the more we are getting closer to that right place to call home. Like Dorothy, I think we can all agree on this, we all know that “There’s no place like home!” And home is where someone is safe and sound and they belong. There comes a time when some families, by no fault of their own, can no longer care for those suffering from this dreadful disease, and when that happens, finding a place that gives a sense of being safe and secure is the key. That’s home. There are local group homes and private sitters that are wonderful, too!

In conclusion, as an Alzheimer’s Association Care-giver Support Facilitator, I typically like to share what areas of concern need to be addressed when looking to place a loved one, for a “holistic” approach to dementia care, according to alz.org (Put alz.org on your “Favorites”) below. These areas need to be assessed or addressed:

• Cognitive health

• Physical health

• Physical functioning

• Behavioral status

• Sensory capabilities

• Decision-making capacity

• Communication abilities

• Personal background

• Cultural preferences

• Spiritual needs and preferences

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