Is Dementia Care Lacking In Nursing Homes?

Clive Ballard, MD, professor of age-related diseases, and dean, University of Exeter Medical School

Clive Ballard, MD

Although a number of policies and initiatives have been undertaken to improve the state of care for patients with dementia in nursing homes in the past couple of decades, very little has changed.

At the 2019 Alzheimer’s Association International Conference in Los Angeles, California, Clive Ballard, MD, professor of age-related diseases, and dean, University of Exeter Medical School spoke with NeurologyLive in an interview about this challenge. He cited a need for improved staff training and better monitoring of patient care as 2 major obstacles which need to be overcome. In an evaluation he and colleagues conducted of 24 care homes, 22 were still in need of improvement despite being rated as adequate.

This, he explained, is in part because the evaluation of nursing homes focuses on whether an individual’s physical health needs are being met, which does not necessarily capture the actual experience that those with dementia have in these homes.

NeurologyLive: What did this evaluation focus on and ultimately what did it reveal?

Clive Ballard, MD: In the UK, we've been looking, in some detail, over a period of time over about 20 years of nursing home care, and I think the disappointing thing is that very little has actually changed. We measured it by observing people for 6 hours in the day to look at what they were doing every 5 minutes, how what their well-being was, what their activities were, and actually, the profile was really distressingly bad.

People were spending a lot of daytime period asleep, a lot of it in distress, and very little of it actually doing anything constructive or engaging with other people. In 40% of the care homes that we looked at, people were spending less than 4 minutes a day engaging with anyone else during that period.

What needs to be done to improve the state of care in these nursing homes?

Firstly, this was quite shocking. But even more shocking is that despite a whole load of policy initiatives over the last 20 years, actually, this hasn't changed at all. I think it's time that we stopped sort of pretending we're doing something about it. We didn't actually really do something about it.

One of the big problems in nursing homes is how you train staff properly, and if care hasn't always been as good as it could be, it sort of turns into bashing the care homes and criticizing the staff. Whereas a lot of the time, they're doing a very difficult job. A lot of the staff providing the hands-on care are on a sort of a minimum or a living wage, and they're not given proper training or support. We're asking them to do an almost impossible job, and I think what we have to do is train them.

Are there any initiatives which have made an impact thus far?

Certainly, one of the initiatives to train people has been something we've been doing in the UK, which is a sort of big care home training program that we've run across a couple of large randomized clinical trials. Really, it demonstrated that it does help staff understand what they're doing better, but also it improves the quality of life for the residents with dementia. It reduces their psychiatric symptoms, it reduces the use of drugs, and it even reduced mortality by increasing positive engagement with constructive, enjoyable activities. The frustrating thing is that we've got the technologies to make this better, we’re just not implementing them.

I think it would be very helpful if it was mandatory to actually have proper good quality training. Certainly, in the UK, it's mandatory to have the training—but there's no requirement for that to be evidence-based or of good quality. What often happens is it's very cheap and short training that isn't actually helping address the issues. I think the requirement for mandatory high-quality training that's approved through some more rigorous process would be very good.

Are there any other challenges in caring for these patients at nursing homes?

One of the other challenges is how we actually monitor the quality of care. One of the shocking things, in a way, was that of the 24 care homes that we did this detailed evaluation in showed that all but 2 of them were in need of much, or radical improvement. All of those care homes had been rated as adequate or good through the CQC process, which is the monitoring process of quality in the UK, and I think that's partly because that process focuses very much on whether people's physical health needs are being met, whether they have pressure sores, whether they're having food choices, or whether proper paperwork is being completed for care plans. All of those things are important, but the problem is it doesn't capture what the real experience of the person with dementia is living in the care home, and I think that process needs to reflect that those social and emotional needs, as well as the physical care needs, are being met.

Transcript edited for clarity.