Caring for a loved one with dementia can be stressful and you may have a lot of questions. It’s important to arm yourself with resources and know how to communicate with your loved one’s physician. Dr. Ronald J. Crossno, Vice President of Medical Affairs and Chief Medical Officer for Kindred at Home, shares his perspective on how families and physicians can work well together.

As someone who started as a rural family physician, I first became interested in geriatrics because of my experiences with dementia patients. This taught me the importance of family caregivers and what a tough time they have, day in and day out.

My understanding of the reality faced by caregivers came in an unexpected fashion during a routine office visit by one of my diabetic patients who always came in with his wife. We’ll call them Mr. and Mrs. H.

Seeing them was always a pleasure since they were both so bright and cheerful. His diabetes was easily managed and we typically spent the encounter reviewing his meds, his diet and their retirement.

One day, I asked, “Is there anything else going on that I need to know about?” Mrs. H began to tear up and became unable to speak. She refused to talk in front of her husband, so I suggested he go back to the waiting room so I could talk with her alone.

Man shaking his wife's doctor's hand

It took quite a bit of back and forth, but the story slowly came out that Mr. H had been acting differently at times for more than a year, but only late in the day and never in front of others. At first she thought it was something she was doing that irritated him, but she became aware that this was a bigger issue when he started a new behavior. He would get up in the middle of the night, find her purse (even if she hid it), empty it out, pee in it and then place the purse in the freezer.

This had been going on for more than six months, but she was so embarrassed to tell anyone that she’d been suffering alone in silence. Confronting him invariably led to him denying that he’d done this and accusing her of trying to make him look bad. During such confrontations, he would become verbally abusive and accusatory. Lately, he had started accusing her of having an affair and that her boyfriend was taunting them by doing this behavior.

This was my first patient/caregiver experience with sundowning, though this is actually both a typical and an extreme case at the same time. Sundowning is a term applied to dementia patients who have deterioration of their mental status at a certain time of day, typically in the evening.

Significant behavioral changes may be common, even when the individual may look relatively normal at other times of the day. Such behaviors are rarely as bizarre as in this case, but accusatory (“I know you’re having an affair”) or persecutory (“you’re trying to make me look bad”) delusions (beliefs that are not based upon fact) are actually very common.

We performed some more formal testing of Mr. H’s mental status and discovered that he had significant memory changes that included being unable to remember new information and getting lost if he tried to drive to the store even though he’d been doing that for years. But during a normal conversation, he seemed relatively normal.

Needless to say, as a newer family physician, I discovered that I had a big knowledge deficit that I sought to correct. This ultimately led to my becoming board certified in geriatric medicine and becoming the medical director of a dedicated Alzheimer’s long-term care facility.

We carefully informed the rest of Mr. H’s adult children about the situation, and after initial disbelief, they rallied around their parents and took turns giving Mrs. H a break. Unfortunately, Mr. H had a rapidly progressive variation of dementia called frontotemporal dementia.

Mr. H and his family decided to move him into a residential facility that had experts who were quite familiar with how to help manage his behaviors so he was not restrained, either physically or chemically.

As Mr. H’s disease progressed, he became bedbound, non-verbal and unable to swallow properly. Swallowing problems can lead to irreversible weight loss, which can be fatal for those with dementia, along with recurring infections.

Studies surprisingly show that neither feeding tubes nor repeated hospital stays for infection management significantly prolong life for individuals who have end-stage dementia. Instead, careful hand-feeding, done in-home or in-facility, is more ideal to improve the quality of life and comfort of the individual, which is what we did for Mr. H when he could no longer maintain his weight.

He died comfortably several months later in the nursing facility that had become his home, with his family and hospice team at his bedside. Mrs. H clearly grieved for her loss, but was supported by the hospice’s bereavement department.

I continue to see her periodically. Mrs. H tells me when we meet how grateful she is that someone asked her that question and actually spent the time to figure out what was going on, as well as for all the care she and her husband received over the next seven years.

Care for such individuals from diagnosis to the very end of the disease was a privilege for me that all too few physicians have been able to experience in today’s healthcare system. This is why I’m so proud to have had a hand in developing our Memory Care program to share what has been learned about best practices in the care of dementia patients at all stages.

Whether it’s care in Memory Care or seeking resources from your family physicians, these programs exist and you should seek them out. Kindred’s Memory Care program offers compassionate care where your loved on calls home, with safety assessments, family education and support, and advanced techniques for the management of any other health conditions. Our staff is experienced in treating those with dementia and Alzheimer’s disease with dignity and respect.

If you have healthcare questions, call 1.866.KINDRED to speak with a registered nurse 24 hours a day, seven days a week. We are here to listen.