Dementia & Skilled Nursing Home Rehabilitation: Care Needs vs. an Apathetic System

Many older adults diagnosed with dementia experience a life event, like a hip fracture, that result in a need for skilled nursing rehabilitation with the goal of returning the individual to the physical state prior to the life event. The challenge in this situation is that most skilled nursing home staff are not trained to respond appropriately to persons diagnosed with dementia or any type of memory loss. Medical providers in skilled nursing communities operate under a different set of rules and regulations placing your loved one with dementia at immediate.

If you are a family member or a professional working to support persons diagnosed with dementia, what can you do to ensure that the individual receives the appropriate rehabilitation? What can you do to ensure that the individual is not permanently resigned to live in a nursing home the remainder of his or her life due to the familiar statement of a “lack of progress” for not meeting insurance standards?

I guarantee that you will hear from staff that “this is a normal progression of dementia,” which really means “we’re not equipped or trained to care for your loved one with dementia and we don’t have time to put forth the effort.” You will hear, “your loved one is not depressed” and other excuses for beneficial medications being discontinued. There is a long list of reasons why your loved one will not improve and may never leave skilled rehabilitation unless you take the appropriate actions.

If you find yourself in this situation, prepare yourself for a battle against a system that lacks compassion and understanding for a special population with different needs. This lack of compassion for persons diagnosed with dementia stems from rules and regulations beyond your control. If you are a caregiver for an individual with dementia you may have already lost this battle.

If you haven’t yet faced this situation, know someone who is, or want to avoid this situation read on to learn ways to advocate for your loved one with dementia and to battle against an apathetic system.

The challenges of an individual with dementia placed in a hospital or a rehabilitation community are similar. The person is unable to advocate for needs and has difficulty communicating and understanding information. He or she is treated like a normal individual with the cognitive skills to receive, evaluate information, and able to respond in a reasonable and thoughtful manner.

Rehabilitation is offered to dementia patients similar to other patients with normal cognitive abilities. The daily activities in rehabilitation communities is tailored to a general population— again individuals possessing normal cognitive abilities.

Due to federal regulations, skilled nursing communities discontinue previously beneficial behavioral medications and deny depression because it is in their self-interest. Staff lack the knowledge, ability, and willingness to take the time to document behaviors, interactions, and observations to support beneficial medications.

Then we have the issue of “patient rights” which is perfect for persons who are not cognitively impaired but is detrimental and harmful for persons with dementia. Professionals and knowledgeable family members know that “yes or no” questions are never presented to a person diagnosed with dementia because the answer is usually “no”.

Participation is better gained by saying “it’s time to go to lunch,” “it’s time to visit the activity room (meaning going to physical therapy).” Persons diagnosed with dementia respond best to a normal daily schedule —not being allowed to lie in bed 24 hours a day because the response to “do you want to get up” is usually “no.” It’s no wonder the person with dementia is experiencing a physical and cognitive decline as the result of interactions, communication, and inappropriate responses of untrained staff.

How do you battle the system? Admittedly, if you have abundant time it is easier to support your loved one than if you are a working caregiver. Engage other family members and friends able to provide support. Depending on the situation, superhuman effort and advocacy may be required to help your loved one.

You know your loved one better than anyone else. You know what motivates he or she to take action. Provide this motivational information to the skilled nursing staff so that refusals of care by your loved one will be few and participation will be greater.
Attend physical therapy sessions to motivate your loved one to participate in the exercises. Remember that statements of “no progress or a plateau” from therapy staff is a deal killer for the health insurance company waiting to end reimbursement for rehabilitation services.
Ask and know under what conditions your loved one will be “discharged” from insurance and will become a private payor. Don’t be naïve in thinking that insurance will pay forever. Insurance companies want to discharge patients from care as soon as possible.
Learn the exercises and encourage participation outside of the therapy sessions. The more repetition and activity, the more quickly your loved one will return to the prior state of physical ability. Many therapy rooms will permit you to bring your loved one into the therapy room to use the equipment if staff are present and the equipment is not being used by another patient.
Participate in cognitive activities of reading and other preferred activities. Cognitive ability supports physical ability.
Talk to all of the community staff at each visit to obtain updates regarding participation and the daily routine. Know staff names and be certain they know your name so that they know you are holding them accountable.
Set weekly meetings with social services, nursing, and therapy staff to review the progress of your loved one.
Don’t accept “normal decline” as a reason for the community to discontinue medications or deny services. Don’t allow physicians to change medications without your approval. Physicians fail to purposely communicate with family members because it’s easier to make a change and ask for forgiveness than to have a discussion that requires time and may be met with disagreement.
Hire a professional advocate, like a care manager, to support you if you feel you are losing the battle, but don’t wait until the battle is lost. Most care managers fight these battles on a daily basis. The more experienced care managers won’t give up until the needs of your loved one are met.

©2017 Pamela D. Wilson. All Rights Reserved.

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