Home > Caregivers, End-stage dementia, Long-term care, Low-functioning > After the Unit, Then What?

After the Unit, Then What?

Back around the mid-1980s, it started to become popular for long-term care facilities in the U.S. to establish self-contained dementia units, with programs designed to make life better for persons with dementia.  I’ve worked in a few of these units, and would be the first to say that there are some pretty good ones out there.

Some of the benefits that can come from residing in one of these units include the availability of large- and small-group activities designed especially for persons with dementia, caregivers trained in working with these unique individuals, and relatively low-stimulus environments to reduce stress.  All units will also have some system to prevent residents who wander from becoming lost, whether that be a locked door or some kind of alarm.

Now, I do have to say that there are some of these units that I would love to change, if I could.  A dementia unit is not just a locked door, and it dismays me when I see a resident placed there primarily for that reason.  I’ve also seen a few units that, to be frank, look like a kindergarten room.  And, often, I encounter staff who has had perhaps only limited training in the specialized needs of persons with dementia.  I’ll be speaking more, in future posts, about how I would like to see some of these units changed.  But, fortunately, there are a lot of good programs out there that are run by people who are quick to keep up with the latest developments.

What I would really like to address here is what happens to the folks who don’t qualify for these specialized dementia units.  Typically, these programs are designed for the persons who are in the middle stages of the disease, who are able to participate in group activities, and who are able to participate to a significant degree in their own care.  They usually don’t have significant medical issues, and are able to motivate themselves around the unit either by walking or by propelling their own wheelchairs.  But, when the disease progresses, as it inevitably does, to the point where the person no longer meets these criteria, then what?

Time after time, I have seen persons who are approaching the latter stages of dementia, who are moved out of these dementia units and placed back into the general population of the long-term care facility.  And that’s not necessarily a bad thing.  They are no longer able to function in a group activity, need more assistance with daily living tasks, and often have increasing medical issues that mean they need more attention and care.  But I wonder if there’s something else we can be doing with these individuals?

Not all residents in long-term care facilities have dementia.  Many are there because of health issues such as heart problems or lung disease, or because they have mobility concerns that prevent them from living independently.  And the system generally works quite well for these folks.  But, for the most part, the medical issues that are present here are not ones that are immediately life-threatening, or progressive to the extent that the individuals can be considered terminal.

But, at some point, it is unfortunately necessary to recognize and accept that dementia is a disease that is not survivable.  Yes, often we can prolong the person’s life-spans, and do so in such a way that they are able to enjoy a high quality of life for increasingly longer periods of time.  However, eventually there always comes a time when we have to turn our attentions to making the person’s last days as comfortable as possible, and helping their families say good-bye in the least painful way possible.  And we have a system set up for helping terminally ill people, when they reach this stage of their lives, and that is through hospice care.

Some people shudder when they hear the word hospice.  And some of the hospice agencies won’t step in until a person is determined to be within six months of death.  But I have seen a lot of good things that come out of a hospice model, that can be applied to those in the latter stages of dementia.  One of those is the attention to spiritual care, another is the provision of more nurturing forms of sensory stimulation.  I’m only just beginning to formalize some thoughts that have been tumbling around in my mind for a little while now, and I’m not honestly sure where I’m going to end up here.  But it is something that I intend to explore in more detail, and I encourage others to express thoughts they have on the subject.

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