In my last post I criticized a reporter for the Australian Financial Review for his characterization of people living with dementia, and of our aging population in general. My comments were aimed purely at his offensive stereotypes, and did not address deeper issues around the subject matter. Now that the furor over that article has subsided somewhat, it’s time to tackle that deeper concern.

The occasion for the article was to describe a move by the Australian government to respond to knowledge deficits in care homes by creating a group of “Severe Behavioural Response Teams”—consultant teams that would travel to homes and help the staff respond to challenging situations that have arisen. The implication is that such situations would primarily involve people living with dementia who have exhibited severe forms of distress.

As our rapidly aging population creates a relative lack of professionals with expertise in dementia and other aging issues, it seems reasonable that traveling consultants might help bridge the knowledge gap. But as is so often the case, the devil is in the details. Will the teams be used effectively, or will they reinforce counterproductive measures?

There are two potential pitfalls I would like to address:

The first is the problem that inevitably occurs when an “expert” is brought in who has little knowledge of the person in question. In order to best understand what may underlie a person’s words and actions, it is critically important to know the many facets that characterize the individual, such as her personality, history, relationships, strengths, challenges, values, and coping styles. It takes time to understand these many dimensions. The usual pattern of health care consultation is one of relatively brief interaction, as there is much ground to cover and many people to see.

In my view, the best consultation (and the approach I try to teach in my seminars) would provide a framework for understanding the person’s distress and then engage those who know the person best to use that framework and their deep knowledge of the person to craft the solutions that will best suit the individual. I am guessing that this is not the charter that the Response Teams have been given.

The second issue, however, is far more fundamental and critical to our overall view of individuals in distress. Too often, the overriding attitude driving these consultations is that it is the person in question who is the problem and whose “behavior” needs to somehow be “managed” by the care team.

Daniella Greenwood, Innovation and Strategy Manager for Arcare Aged Care in Australia, brilliantly expressed the problem with this view in her plenary address at Alzheimer’s Disease International last April. I recently wrote Daniella to let her know that I wanted to address this topic, and she kindly shared her thoughts.

I’ll let Daniella tell it in her own words:

Dear Al,

I have been incredibly heartened by the level of national and international condemnation of the recent – and appalling – AFR article. As you point out in your email, this has also led to increased international attention on Australia’s approach to dealing with the ‘severe behaviours’ of people living with dementia in a residential care setting. As you will recall, in my recent plenary at the ADI conference in Perth, I specifically addressed this issue by posing and attempting to answer the following question:

“How might the teams of experts who are called in to assist providers in supporting the most distressed residents, actually work with providers to improve operations and approaches, rather than merely focusing on individual care plans?” 

When the teams of visiting experts place their focus on the distressed individual – rather than on the person’s relational and physical environment – it only serves to further stigmatise and pathologise the distress. Staff internalise where the focus is placed.

Suggesting that the answer to a person’s distress might be a clock in their room, a fiddle-apron, or anti-psychotic drugs  – when the building and interior design is disabling, and a range of different rotating care staff are trying to boss them about and take their clothes off – what do you honestly believe might need to be addressed first? 

The focus is on BPSD, and all emotions and expressions are lumped under this unhelpful banner and all viewed within the frame of a dementia diagnosis. Expressions and moods are seen as medical symptoms rather than as ordinary human emotions that we all experience, emotions that would benefit from the same kind of psychological and spiritual support that people without a dementia diagnosis might have access to. There is no space to think of these expressions and moods as completely understandable personal reactions to illness and loss, a disabling environment, or being surrounded by bossy strangers.

Staff watch and learn from the team of visiting experts, and they internalise both the focus and the language. How can we ask staff to look for the meanings of the distress, to look at what the person might need or what they might be responding to, and then use language and approaches that reinforce to them that the emotions and actions of distressed people are merely ‘symptoms’ of dementia?

I would like to see a team of experts come in – and after ruling out any underlying medical conditions – focus attention first on the physical environment, staffing model, duties lists, potential for further psychological and spiritual support, and on the way that individuals are spoken to and treated by the staff who support them.

To her last point, Daniella remarked to me in conversation that wouldn’t it be a wonderful turn of events if a consulting team came into the home, listened to the staff’s concerns, and then proceeded to observe everything except the person in question? While there is certainly much to be gained by a personal visit, her point was that we have to look first at ourselves—the systems, relationships, and other environmental factors that might underlie a person’s “completely understandable personal reactions,” when seen in an experiential light.

As Viktor Frankl once said, “An abnormal reaction to an abnormal situation is normal behavior.”

As I said, the devil is in the details.