let’s get dead right about dementia and dangerous drugs

 

Efforts to reduce antipsychotic use in dementia care are starting to bear fruit, but a lot of work remains to be done.

(Accepted for publication by the Journal of the American Medical Association 161201; © 2016 under the CC-BY-NC-ND 4.0 license http://creativecommons.org/licenses/by-nc-nd/4.0/)

Some people say the only way to manage behaviours and symptoms that have become associated with dementia is to medicate people with dementia. Those people are dead wrong. Yes, antipsychotics such as risperdone, quetiapine, and others may be used judiciously to address potentially dangerous situations and/or real psychosis. However, geriatricians and eldercare experts worldwide agree[i] that when antipsychotic medication is given to elderly people with dementia it should beat the lowest possible dose for the shortest possible time and always after all other avenues have been tried and have failed. In other words, these medications should only be used as a last resort.[ii]

Emerging facts show the percentage of people with dementia who benefit from antipsychotics is small, the risks may not be worth it, and there are better, more effective, non-pharmacological ways of improving the quality of life of those who live with the disease as well as that of those who are their care partners. AND, ample evidence proves the use of antipsychotics in elders with dementia can be successfully reduced.

Let’s start with the United Kingdom. In 2008, an all-party parliamentary group on dementia in the UK produced a 36-page report: “Always a last resort: inquiry into the prescription of antipsychotic drugs to people with dementia living in care homes.”[iii] Essentially, the group found the over prescription of antipsychotics to be a “significant problem in many care homes” due to a:

• lack of dementia care training
• lack of leadership in care homes
• dearth of person-centered care

The report spurred the UK government to create a national dementia strategy[iv] in 2009; it focussed on three key areas:

1. improved awareness
2. early diagnosis
3. higher quality of care

The government also commissioned dementia care expert Dr. Sube Banerjee to produce an independent review on the use of antipsychotics in elderly people with dementia in the UK. The report concluded:

• antipsychotic use was too high in patients with dementia
• the associated risks outweighed the benefits in most cases
• drugs seemed to have only a limited positive effect in managing dementia symptoms
• antipsychotics seemed to be used too often as a first-line response to difficult behaviour in dementia (most often agitation), rather than as a considered second-line treatment when other non-pharmacological approaches have failed

On the basis of these findings, the UK government pledged to reduce by two-thirds the use of antipsychotics for people with dementia by November 2011. It was an extremely ambitious target. Nevertheless, in June 2012, the UK National Dementia and Antipsychotic Prescribing Audit Summary Report showed that while the number of newly diagnosed people with dementia increased by almost 68 per cent between 2006 and 2011, there was a 60 per cent decrease in the number of people with dementia receiving prescriptions of antipsychotic medication (i.e. down from about 17 per cent in 2006 to about 7 per cent in 2011).  While the UK missed its goal of a 66 per cent reduction, its achievement of a 52 per cent decrease in two years is remarkable.

In May 2016, the Canadian Foundation for Healthcare Improvement (CFHI) reported the results of a pan-Canadian initiative to reduce the inappropriate use of antipsychotic medication among seniors in long-term care facilities.[v] The CFI identified five specific problems with antipsychotic drugs:

• they are not the best strategy for managing dementia
• they are associated with cognitive decline (i.e. they worsen dementia)
• they can cause serious harm, including premature death
• the prescriptions are expensive
• the associated complications from overuse are even more expensive

The Foundation’s initiative, implemented in 56 long-term care facilities across seven Canadian provinces resulted in reducing or discontinuing antipsychotic use in 54 percent of the 416 residents who participated in the study over the course of a year. Fifteen Foundation-supported teams established “more patient-centred, team-based and data driven approaches to care” in the 56 facilities. By the end of the project antipsychotic use was completely eliminated in 36 percent of the participants (150 people); it was reduced in another 18 percent (75 people). Reducing the use of antipsychotics also resulted in:

• fewer falls (down 20 per cent)
• less verbally abusive behaviour (down 33 per cent)
• less physically abusive behaviour (down 28 per cent)
• less socially inappropriate behaviour (down 26 per cent)
• less resistance to care (down 22 per cent)

Most important of all, the residents experienced a better quality of life, and their families “got their loved ones back.”

In the course of the collaborative, the CFHI found “a troubling discrepancy across jurisdictions concerning the use of antipsychotics in long-term care (LTC) without a diagnosis of psychosis.” In other words, people who live with dementia but who have not been diagnosed with psychosis are being given drugs that are designed for people who have been diagnosed with psychosis, and the practice varied widely between regions as well as between individual facilities.

According to the CFHI’s report, only six Canadian provinces and territories publicly report on potentially inappropriate use of antipsychotics in LTC. Usage ranges from a low of 21.1 per cent of people in Alberta LTC homes to nearly double that (38.2 per cent) in Newfoundland. Québec, the province in which I reside, is one of those for which such data is not available. However, given that the rate of prescription of antipsychotic medication to the elderly in Quebec is three times that of Alberta,[vi] one can only imagine the frightening amounts of unnecessary antipsychotics that are currently being given to elderly Quebeckers with dementia in long-term care facilities. Tellingly, and tragically, no Quebec facilities participated in the Canadian Foundation for Healthcare Improvement’s study.

 

Meanwhile in the United States, the National Partnership to Improve Dementia Care in Nursing Homes, a collaborative effort between the Centers for Medicare and Medicaid Services (CMS), and “federal and state agencies, nursing homes, other providers, advocacy groups, and caregivers” is working to improve comprehensive dementia care by:

“Finding new ways to implement practices that enhance the quality of life for people with dementia, protect them from substandard care and promote goal-directed, person-centered care for every nursing home resident.”

It intends to do so by reducing the use of antipsychotic medications while enhancing the use of non-pharmacologic approaches and person-centered dementia care practices. Since it’s launch in 2012, the National Partnership has documented significant reductions in the prevalence of antipsychotic use in long-stay nursing home residents across the United States (i.e. from about 24 percent in 2012 to less than 20 percent in the second quarter of 2015.) The CMS aims to reduce the use of antipsychotic medications in long-stay nursing home residents by 30 percent by the end of 2016.

While these initiatives are heartening, they are long overdue. And the reductions that have been realized represent averages; that means some facilities are still over prescribing at prevalence rates as high as 60 percent. I have seen the devastation and suffering caused by the inappropriate use of antipsychotics to “treat” people who live with dementia. My mother suffered from being inappropriately prescribed risperidone and quetiapine in tandem for four years. It was nothing short of abuse. It broke my heart, and transformed me into a fierce advocate for better care. I hope initiatives like those I’ve described in this piece continue and that they will one day spark a tsunami of change in the way we care for people who live with dementia around the world.

Our elders who live with dementia deserve to be treated with dignity and respect, not abused with chemical restraints. Why do physicians continue to prescribe antipsychotics when these drugs have significant risks (death tops the list), and have been proven to be only marginally effective in addressing the behaviours for which they are prescribed? Why do we do things that have been proven dead wrong when they can clearly be righted? How can we stop poor care practices and institute better ones?

The members of AMDA have the answers; it’s long past time to implement them. I call on all LTCF administrators and medical personnel to make it their personal mission to put an end to the inappropriate use of these medications in people who should not be taking them.

References

[i] https://myalzheimersstory.com/2015/10/24/the-worldwide-case-against-giving-antipsychotics-to-elderly-people-living-with-dementia/

[ii] https://myalzheimersstory.com/2015/09/26/7-things-you-should-know-about-how-and-why-antipsychotics-are-inappropriately-prescribed-to-people-living-with-dementia-in-care-facilities/

[iii] https://susanmacsites.files.wordpress.com/2023/03/a3f5a-always-a-last-resort-uk-appg-2008.pdf

[iv] https://www.gov.uk/drug-safety-update/antipsychotics-initiative-to-reduce-prescribing-to-older-people-with-dementia

[v] http://www.cfhi-fcass.ca/NewsAndEvents/NewsReleases/NewsItem/2016/05/16/new-national-results-taking-seniors-off-antipsychotics-shows-dramatic-improvement-in-care

[vi] https://myalzheimersstory.com/2015/11/01/quebecs-eldercare-drug-culture-a-provincial-picture-paints-1314-shocking-prescriptions/

https://myalzheimersstory.com/2017/11/15/the-broken-lens-of-bpsd-why-we-need-to-rethink-the-way-we-label-the-behaviour-of-people-who-live-with-alzheimers-disease/

https://myalzheimersstory.com/2018/03/18/alzheimer-didnt-do-this-drugs-and-dementiajail-did/

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