Advocating for In-Home Assistance for a Loved One with Dementia/LBD

Let's be realistic...anyone with any form of dementia can use in-home assistance as soon as possible. Here are a few ideas to help you get the assistance started when you are on Medicare.  

If your loved one isn't currently in a state of definite decline, I would ask your doctor about referring you to Home Health for help. If they don't require skilled nursing assistance, your doctor can ask for Home Health to provide just the services they would respond best to. If they have any swallowing or speech changes, see if your doctor would recommend a speech evaluation. If they are having mobility challenges, a physical therapy evaluation can be ordered. If problems with feeding themselves, dressing or other grooming or coordination activities such as writing and dexterity, an occupational therapy evaluation can be ordered.  

Don't be surprised if you find challenges with getting therapists to agree to work with dementia, because there are a lot of therapists out there who seem to view dementia patients as unsalvagable, which is very sad. If that is the case, advocate by making phone calls to other agencies and interviewing their views on therapies until you find an agency who is supportive.The consequences of not fighting to show improvement for Home Health results in your loved one being considered "stable", which then disqualifies you for assistance. Throughout my husband's care, I wouldn't allow Home Health to drop us because I would call attention to every little improvement I could see to help them document it for Medicare coverage. I also became very familiar with the administrator at the Home Health we used, and I was able to press for care much longer than we would have gotten it otherwise. If a therapist gave up on him, I would point out how much progress he'd made, discuss the potential for greater progress, and they would ask other, more dementia-tolerant therapists on their staff to treat my husband so he would be allowed every opportunity to continue to improve.

On the flip side of Medicare Home Health certification requirements, Hospice can only come into play if your loved one shows decline and a doctor certifies they have less than 6 months. Hospice care is the "cadillac" of care when you are out of treatment options for your terminal illness. It can be difficult to come to grips with a transition to Hospice, but their palliative care is an absolute godsend for medical assistance for both loved one and caregiver.  Because I advocated to call attention to status improvements for Home Health, we were ultimately able to transition straight from Home Health into Hospice services with no interruption in the nursing support we desperately needed. Now I advocate by noting every decline symptom with Hospice to assist with their recertifications with Medicare.

It's a battle, but a battle worth fighting. Being a strong advocate is mandatory at EVERY stage of this disease, whether fighting to stay on Home Health by calling attention to improvement...fighting for proper care and POA communication in a hospital setting...pointing out every tiny bit of decline for a Hospice...or advocating for oxygen flow continuation and pain management continuation in my husband's current setting, with Hospice at my side.