One of the most difficult, emotionally trying and even guilt-inducing decisions any geriatric caregiver of a dementia sufferer has to make is deciding when to place that individual in some type of congregate care setting, i.e. assisted living or the dementia area of a skilled nursing center.
Such a decision is never clear-cut as each case is different and has varying circumstances. In some cases it may take months, if not years of emotional wrangling before both the individual with dementia and the caregiver can make the final choice.
Don’t hang your head in despair just yet; there are some generally agreed upon guidelines that exist to help make sense of when to make the decision to place the dementia sufferer outside of the home setting. When reviewing these guidelines, factors such as family finances and family dynamics should also be taken into account.
Dementia Care Placement Triggers
Let’s first review the factors that can often justify placement for someone with dementia:
1. Caregiver burden/burnout
When a spouse, loved one, or other sandwich generation caregiver provides the primary or in some cases sole care for someone with dementia, it can understandably take a huge physical and psychological toll, especially when the care lasts for several years. It is not uncommon for the caregiver to develop his/her own health issues or exacerbate existing health issues as a result of caring for the individual with dementia.
Unfortunately, many caregivers act selflessly by ignoring their own health concerns until they push themselves to the brink or a crisis occurs and they can no longer realistically take care of their loved one at home. The goal in avoiding this kind of crisis is for the caregiver to recognize when he/she can no longer care for the person and be honest enough to admit it to him/herself. Unfortunately, many caregivers need others to intercede before they will admit it is time and even then feelings of guilt can delay the decision further.
A number of dementia sufferers develop a habit of wandering away from their residence. Despite caregivers best efforts, people with dementia will find a way to elope if they really want to without understanding the risks involved. Once these episodes occur more frequently and are accompanied by the need to have police and other emergency authorities involved to assure the person’s safe return or in worse-case scenario situations where the individual with dementia suffers injuries as a result of the elopement, then it is fairly clear that this person needs to be in a more secure environment to minimize these risks and insure his/her safety.
Incontinence of bladder or bowel can often be addressed by family caregivers without significant difficulty, however, once the incontinence reaches a less predictable and manageable state, the burden of constant changes and accidents can weigh heavily on the physical care of the individual for the caregiver. Repeated unpredictable episodes of incontinence can be the basis for added stress on the caregiver and can trigger dramatic moments of desperation and tension in the relationship. These are the type of “breaking points” that can lead a caregiver much further toward making the decision to place his/her loved one in a community setting.
4. Physical/Verbal Abuse
While it is difficult to think about and even more difficult to articulate to others, physical and verbal abuse can occur on both sides of the dementia caregiving relationship. With stress levels being high many times, unintended incidents can occur that one party or the other regrets. In the case of the person with dementia, these behaviors can almost always be attributed to the disease. Nevertheless, they can create an untenable and, in some cases unsafe, situation for the caregiver, especially if these behaviors are repeated and not adequately addressed otherwise.
Possible Solutions for Care Placement Triggers
For each of the four placement trigger factors mentioned above, solutions can be found if the strong desire is to keep the person with dementia at home as long as possible, and in at least the first three cases, resources are available to support that decision:
Caregiver burden/burnout: If the financial resources are available, caregivers can find support through various sources including hiring private geriatric case managers to assist in care and also utilizing resources that might be available in the community such as dementia day care services. If possible, family and friends can be included to assist in the caregiving role on a scheduled basis to give the primary caregiver some relief.
Wandering/Elopement: Some caregivers have gone to the trouble of changing their home door locks as well as incorporating more recent developments in at-home dementia care including the use of wander guards for their loved ones (that will track their whereabouts) and other GPS-type devices that can pinpoint a person’s whereabouts should he/she get lost. Depending on the family’s financial circumstances, this may be a relatively inexpensive way to address the problem.
Incontinence: As is the case with caregiver burden, additional resources though paid geriatric care management or friends and family may be sufficient to help ease the stress of this aspect of the disease for the primary caregiver. This can sometimes make the difference for caregivers who are feeling overwhelmed by their responsibilities.
Physical/Verbal abuse: If these types of behaviors are occurring regularly or even more than once, it is unlikely that the home situation can be resolved, even with the addition of support resources. Medications may be added or adjusted by the doctors involved to assist in minimizing these events for the person with dementia. However, the reality is that some dysfunctional family dynamics do continue to occur for various reasons including limited financial resources or lack of knowledge about the disease and also the possibility of qualifying for alternate living arrangements, most often in the form of Medicaid spend-downs.
In most cases the strong preference among families is to keep their loved one at home for as long as possible. However, once the dementia reaches a certain point or stage of the disease, the advantages of keeping someone at home can begin to lessen and the advantages of placing him/her in an appropriate congregate care community that specializes in dementia care increase.
In the next installment of this blog topic, we will outline and discuss the steps and aspects involved once the decision is made for placement. For many, these steps place them in “uncharted waters” that can be made easier with some basic information about how the process works.
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Authored by Scott Tolan, Care Manager & Guardian Representative
Scott works with clients on a one-on-one basis to meet their needs and help them maintain a level of independence and dignity appropriate to them. His primary area of expertise is dementia and dealing with individuals with memory impairment. He has worked with clients and family members in various settings, including assisted living, skilled nursing, home care, and hospice.
Scott has completed advanced training and certification for special care/dementia unit directors that focuses on an activity-based approach in working with dementia residents. He has also facilitated several support groups for family members of those with memory impairment.