‘You can’t manage what you don’t measure’: Hospitals slow to recognize increasing number of dementia patients

Do you ever wonder what it’s like to have dementia? You would not be able to remember things quickly or accurately. You probably would not be able to tell a story well or always understand what is going on around you. You might have problems with words, saying “toothbrush” when you mean “pen.” Needles might look like knives, shiny floors like pools of water. You might not be able to understand the consequences of your decisions.

Now imagine what it would be like to go to an emergency department or stay in a hospital.

We work as an emergency doctor and as a geriatrician. We know that many people living with dementia come into our emergency departments and hospitals every day. And yet we think that our systems often fail to even see them or recognize their reality. We know that we have no systems in place to identify people living with dementia, measure how many there are or how their dementia impacts our care. Because of our inability to recognize, measure and manage dementia within hospitals, the care of people with dementia is not as good as it could be. And hospitals are not implementing programs to improve.

Hospitals, like every part of our society, have been slow to acknowledge that more and more Canadians live with dementia. And slower to make changes to improve both their care and hospitals’ efficient functioning. Canadians living with dementia are 50 per cent more likely to suffer in-hospital harm such as new confusion, physical deconditioning with loss of ability to walk, disability, a doubled length of hospital stay and avoidable investigations.

Patients and hospitals pay a high price for this lack of attention. It leads to increased hospital crowding – sometimes referred to as “hallway medicine” or “bed block.” Patients with dementia, recognized or not, now account for almost half of all alternate level of care days – patients who have no active medical problem requiring a hospital but can’t go home.

Some hospitals have implemented small-scale innovations – an emergency department screening program here; a volunteer program there. But few have identified that a large part of their core users and the main driver of their alternate-care issues are people living with dementia. And that those people and the hospital and the health-care system will benefit from a committed, tailored approach to their care.

Few, if any, Canadian hospitals have a system-level commitment to dementia strategies that proactively plan for the escalating numbers of Canadians living with dementia who will be admitted to our hospitals. We turn a blind eye to the “elephant in the room” of those escalating numbers despite being crushed by it. This willful ignorance results in hospital overcrowding and prolonged stays and impacts users of all ages.

Why the ignorance?

Improving our system and the care of people with dementia starts with doing something banal – counting them. Every management wonk knows that “you can’t manage what you don’t measure.” Yet most Canadian hospitals cannot accurately identify how many people in their emergency departments or hospitals have dementia. It remains a “pre-existing condition” that we just don’t see. It’s not the reason you’re in the hospital, just something you have in the background.

Unidentified or unmeasured, its impact on the way that hospitals are assessed, like length-of-stay or even mortality, is nearly invisible to hospital administration and boards. Dementia becomes lost in a sea of other priorities and marginalized. It is then a challenge to secure institutional support to implement even small-scale interventions to improve care. “Out of sight is out of mind” when it comes to prioritizing dementia care. We can change this, but only with commitment to making dementia measurement a priority and to better data systems.

Today, in every hospital in Canada, we know the level of sodium or the weight or the COVID status or hundreds of other data points about every admitted person. And yet we have no idea how many of those people have a condition that impacts every moment of their care. Hospitals need to measure the day-to-day impact of dementia on their patient flow and outcomes and on the lives of their patients and staff. Accurate measurement would drive prioritization and policy.

As in every area of society – housing, transit, recreation, social services, the arts – hospitals need to recognize that people with dementia are a large part of their user group. Seeing them, counting them, will improve their care.

Required elements of a comprehensive acute care dementia strategy

An excerpt from “Failing to Plan for Dementia is Planning to Fail” by Dr. Frank Molnar in geriatricsjournal.ca

• Hospital-level data: “One cannot manage what one cannot measure.” Accurate identification of patients with dementia in each hospital to measure hospital-level outcomes. 

• Strong leadership and corporate commitment: Commitment of senior management team and board of governors to direct needed resources and remove barriers.  Multidisciplinary dementia quality improvement teams with clear governance structure and a communication path to senior management.

• Detection and documentation: Screen for cognitive impairment (caused by dementia, delirium, etc.) in all patients over 65 years old, starting in the emergency department.

• Value and support families: Directly engage families in care planning, and ensure families are provided with peer support and training. Build in multiple strategies to obtain feedback on an ongoing basis.

• Person-centred, timely, individualized care that meets basic physical needs: Develop practical care plans (within an established timeline) that address needs through the journey from the emergency department to inpatient ward to discharge and follow-up.

• Staff education, ongoing training: Support staff with education and real-time frontline coaching as well as in dealing with the emotional impact of dementia care to prevent compassion fatigue and burnout.

• Dementia care expertise: Require dementia care expertise be present in the emergency department and available specialist services.

• Nonpharmacological prevention and management of responsive behaviours: Prioritize non-pharmacological behavioural prevention and management through the development of dementia care pathways/protocols, policies and hospital-wide education and training. Use medications as a last resort where non-pharmacological approaches are inadequate.

• Individualized proactive discharge planning: Initiate early discharge planning, assessing both patient and caregivers’/care partners’ needs, engaging key community organizations, providing support and resources to caregivers, and clarifying goals and limits of care. Acute care hospitals, community organizations, and long-term care should collaborate and communicate online to facilitate effective hand-offs during discharge/transition process.

• Supportive physical environment: Create an appropriate physical environment to reduce distractions, help orient patients, and minimize responsive behaviours. Recognize that simple changes such as labelling items, using whiteboards for messages, calendars, and clocks can all assist in helping to orient patients.