Our dementia rollercoaster ride

Brett Partington runs ‘Dementia Downunder’, an online support group for people in Australia who are impacted by dementia.

Brett shares his story about his father, Bob, who is currently in the late stages of Alzheimer’s disease, and has previously displayed uncharacteristic aggressive and disturbing behaviour during hospital admissions. Their story highlights that making the effort to learn about a person with cognitive impairment and consulting with family members is time well spent.

Brett says: “The value of knowing a person with dementia’s background and history cannot be emphasised enough. You cannot successfully care for someone with cognitive decline unless armed with this knowledge. Calling people by their name, advocating for them, and entering their world are simple steps that can go a long way. Dignity and respect has to be a priority, and given to people at all times.”

Issues/problems faced

Dad is 71 and in the late stages of Alzheimer’s disease. He is one of the nicest people on the planet, however this disease brought some violent and disturbing behaviours that have really tested our family, his nursing home and the hospital system.

Dad has had severe reactions to medications (antipsychotics and pain patches) and also dosage changes which brought out a side of him that we had never seen before.

This included swearing, hallucinations, paranoia, depression and violent outbursts, and all from a man who has never uttered a swear word or argued with his wife in over 50 years of marriage.

Dad has been admitted to hospital via the emergency department three times for a total of more than 104 days, which included over 20 ‘code black’ incidents in which he was restrained by security teams and two visits to a mental health assessment ward.

Within the hospital environment:

  • Wards are noisy with bells and alarms constantly going off, and hallways are cluttered with people and equipment.
  • There was no safe area for him to walk. Dad started walking the hallways, clocking up many kilometres per day (and night). As Dad was violent at times, our family had to try and keep him in his room as much as possible.
  • Showering was extremely difficult as the communal bathroom had no shelving for towels or toiletries (they are not hygienic), the flexible shower head was not attached to the wall (which means you only have one spare hand to use) and there was no fan ventilation (creating hot, steamy conditions).

In terms of coping with Dad’s behaviour:

  • Dad was allocated a ‘nurse special’ 24/7 for almost his entire hospital stay. Often the nurses allocated to Dad had little or no dementia training, so at times, they inadvertently triggered a bad behaviour due to their lack of knowledge.
  • On too many occasions nursing staff ordered code blacks or extra medication to de-escalate behaviours which could have been avoided by using distraction and calming techniques.
  • Our family had to takes shifts to try and continually distract and calm him.
  • Hospital staff were unable to shower Dad as he kept hitting out, so family members would do this task. In the mental health assessment ward, family members were not allowed so 4 staff were showering Dad (with difficulty) at the one time in the same room.

Strategies that made (or could have made) a difference

Getting to know Dad and learning about dementia:

  • On the change of shifts I would coach the ‘nurse special’ on how to engage with and shower Dad and calm him down. As the weeks rolled by the nurses understood Dad, knew the signs to look for and were able to cope with his behaviours. Several were able to shower and dress him by the end of his stay in hospital.
  • At the mental health assessment ward, I was asked to fill in a detailed form, which was designed to find out about Dad’s history and background, his likes and dislikes and possible triggers and calming strategies. I put a lot of time into this document and it certainly paid off as it created a template for the nurses to follow to manage Dad better. I passed on all my tips on showering him. Within days, nearly every nurse was able to shower and dress Dad by themselves with no issues whatsoever.

Calm environment:

  • Dad was discharged from hospital and assessed at a mental health ward, which specialises in dementia. The environment is almost silent with minimal furniture and very few items, which kept stimulation to a minimum. Each patient is allocated a nurse who monitors and documents observations across every 15 minutes. Amazingly, on the first day in this ward Dad stopped his manic walking, placed himself in a chair and just relaxed.

Tips for others

The number one priority for nursing staff should be to find out the person’s background and history as well as any ‘triggers’ or methods to de-escalate bad behaviours. They should involve the family as much as possible and learn from them.


Dad is back at his nursing home, they have sorted his medication and the quieter, familiar environment has meant we have enjoyed two months of incident free living. Every carer in the nursing home can now shower and dress Dad and he is happy and content. He loves the company of the other residents and staff. Our family is now getting a well-earned break from caring as we prepare for the next challenge we face in our ‘rollercoaster’ journey.