Anticipating Progressive Dementia in Assisted Living Facilities

There are many different types of settings in assisted living centers in which patients with end-stage dementia reside. These settings may take the form of a specialized floor within a larger building of normally functioning residents; separate assisted living facilities that just take care of patient’s with dementia; and specialized units within Continuing Care Retirement Communities (CCRC’s). As the entire field of assisted living becomes more complicated we may see further hybridization from these basic models.

The issues of the demented patient are unique in many ways especially since dementia has a natural history of progression of their disease with increasing decline and eventual demise. There is a wealth of scientific literature describing expected decline in function over time; so that while for the individual patient the pattern may not be predictable, the pattern for the larger group of patients general trends that can be anticipated. Certainly the goals of a well-run assisted living facility with specialized programs in dementia would be to maintain the resident in the current setting as long as possible; however, there are many cases where the individual is no longer safe in the environment or it is no longer desirable for the resident [or the family] to reside in that setting due to medical complications, psychosocial issues, and/or financial issues. Each facility has their own process to work with the patient (and their families) during the decline.

Our quality improvement organization has assisted several assisted living facilities in developing a policy that addresses changes in the function of the resident that is no longer safe in their environment. We selected a proactive approach, which we will outline below, to address these patients as their decline may affect their ability to be a facility. We have assisted several facilities with a general set of guidelines so that there would be few or little surprises for the family members of the resident. Our policy was designed to help the family anticipate the need to change to another type of setting or to beware that additional resources are needed in the current residence. Once a resident has been identified as approaching the need for a higher level of care (for example skilled nursing facility or more personal care while remaining at the assisted living facility), the following action items are performed:

  • The family will be notified.
  • The medical provider will be notified.
  • The staff will increase the resident care plan meetings on a monthly basis rather than quarterly.
  • The family will be provided with information about care management agencies available to assist them in decision-making and appropriate placement to meet the changing needs of their loved one. This would include hospice if deemed appropriate by the clinician.

There are several conditions that trigger circumstances where the resident may no longer be appropriate for the assisted living environment. These include when the resident becomes bedridden (except in cases of hospice). Sometimes the resident is no longer able to participate in transfers or the transfers become too complicated. Once a mechanical lift is required, the patient may require additional assistance that cannot be delivered at the usual assisted living facility level of care. If the resident requires a restraint then certainly they are not deemed appropriate for this setting. Half-rails on the bed may be acceptable for care if they are being used for mobility and self-transfers within the bed: as with the resident in skilled nursing facilities, they must be able to demonstrate their use unaided or else they can increase injuries to the resident. The perceived need for side rails for patient safety is another indicator that the resident’s function may be declining. If the resident becomes a danger to themselves or to others that cannot be explained by concurrent medical illness such as an infectious process we will also address this issue with the family. If the resident requires therapy at any level that cannot be provided by a home health agency such as physical therapy, occupational therapy and simple wound care that would also trigger a response. If the resident requires intravenous therapy or other skilled nursing services that are not provided by home health that would also be included. If the resident also consistently refuses medication or the residents medical power of attorney (MPOA) refuses to allow the use of medication to assist in behavior management when such medication is deemed appropriate for the situation as determined by the medical provider (physician, nurse practitioner, physician assistant and/or consultant such as a psychiatrist) then we will also initiate the responses noted above. If the resident begins to refuse care on a consistent basis and if we feel that it may be a danger to the resident or a sign of significant decline we will also initiate these meetings.

As the field of assisted living continues to mature, it is of utmost importance to begin to develop policies and procedures that are consistent with both patients’ rights but also with their medical safety in a facility. By initiating the above process, we have been able to proactively deal with many of the challenging residents with advancing dementia in assisted living facilities that we work with.

© Scott Matthew Bolhack, MD, MBA, CWS, CMD, FACP, FAAP

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