A portrait of dementia and changed behaviours

“A person with dementia sees the world very differently to us. The light, sounds, touch, smells and taste signals that enter a brain with dementia create a world that is inconsistent with reality.

Trying to figure out what a person is experiencing is necessary to set up appropriate conditions and an environment that fits their reality and de-escalate a change in behaviours.”

I did not meet John on the day he moved into the RACF. While John's world was shrinking, I was in Canberra at the Aged Care Clinical Advisory Committee meeting. As John was looking around the two rooms that are his new home, I was discussing antipsychotic use in aged care homes and how these medicines are overprescribed. Little did John or I know, we were talking about his future. It is easy, sitting in a board room and discussing matters of importance, to forget about the person at the end of the line. The problem of overprescription of antipsychotics should not stop us, as clinicians, from using them with consideration, at the right time, for the right person.

I met John in his room on my return. He stands tall and strong amongst the ornate, foreign furniture and says he wants to go home. I empathise and explain that this is his home now. Because I stand as tall as he does and have a stethoscope around my neck, he does not argue, but his expression conveys his displeasure.

John doesn't have the cognitive capacity to tell me much about his life, but his brother does. The love and dedication he has for John is a reflection of the man. It turns out John spent most of his adult life in Brazil around the LGBTQ community. He never married and has no children, which leaves his brother as his guardian.

“John enjoyed exploring the world, which we learnt does not stop on his arrival at the home. Within the first week of his stay, John leaves the building to walk the surrounding suburbs. In aged care circles, that is called ‘wandering’.”

Managing John’s wandering is complex, so a case conference involving his family is required. The issue is that the free bus service comes past the home giving him easy access into Adelaide city, which may increase the risks associated with his wandering. John is not a man to be confined, and when it is attempted, it frustrates him, and he, understandably, becomes angry.

The conundrum arises – duty of care versus liberty and freedom? As John’s cognition is poor, he is vulnerable and at risk. His brother, understanding the consequences, says "Let him walk", and the team at the home agrees. Confining John against his will is a bigger risk to his wellbeing than the risks of wandering.

Ultimately, there is some criticism of the home for letting John wander. For John’s safety, staff suggested installing a GPS tracking application on his phone so his whereabouts are known at all times. On a few occasions, a staff member drives into the city to bring him home. Some people praise the home for giving John the freedom he desires and needs. However, others disagree and criticise the home for allowing John to wander. Fortunately, for everyone concerned, he does not come to harm, and over time the problem resolves itself.

This is typical for behaviours related to dementia. As the person deteriorates, the behaviours may change or disappear. As John becomes more confused, he loses confidence and remains close to the home. The positive consequence of this is that the more he is around, the more he makes friends.

When John’s behaviour is triggered by certain factors, he can become paranoid and aggressive. Then he starts shouting and makes threats. John is scary when he is angry, and people feel very threatened. Flashbacks to his time in Rio and being followed by unsavoury characters return. Nurses, who stay with him to ensure his and others’ safety, are perceived as a threat and they escalated the problem by making him feel threatened. 

And then, just as abruptly as John’s shouting started, it settles and he becomes calm again. But the distress in the staff and other residents remains, which suggests that further interventions should be considered.

“People with dementia may manage stressors poorly, and small stress can trigger a large response. In the LST model, include medical stressors such as pain, constipation, depression, etc.

The Unmet needs model is self-explanatory. Did John have a beer every night or a coffee every morning? Is he bored?”

In John's case, the expertise of Dementia Support Australia (DSA) is called in. Their support and suggestions help manage his triggers and de-escalate his behaviours. We are to approach John from the front, talk to him with clear slow language and not to follow him around the home. We need to ensure that all nursing staff and carers are aware of this. Give him space and time to express himself and address possible boredom.

John is also referred to the local geriatrician. We are lucky to have a geriatrician that visits the Home and he sees John promptly.

It is quickly established that this is not a delirium or another medical problem. There is no indication of pain, depression or constipation. John's blood results are normal.

For a while, the interventions work, and John settles. But, as sometimes happens with dementia and changed behaviours, the reduction in behaviours is only short-lived. A few weeks later and suddenly, John becomes very distressed, angry and aggressive with no apparent trigger. It seemed that he now has delusions, hallucinations and paranoia. John talks about bombs in the home and that people are out to get him. With no obvious trigger, unmet needs or obvious stressor, a thorough physical assessment is completed to rule out other causes of his sudden deterioration, such as a UTI. John's aggression and agitation get to the point that the staff are not able to manage him, and there is talk of admitting him to the local hospital.

It may be time to consider medication.

“Antipsychotics and benzodiazepines for the management of changed behaviours are to be respected. They have their place, but the consequences of prescribing them are not benign. Significant and serious side effects include (but are not limited to) an increase in mortality and cerebrovascular events, so prescribing is to be carefully considered."⁵ 

For John, this may mean increasing his risk of falls and drowsiness which may limit his ability to participate in meaningful activities, maintain continence or even eat.

As the prescriber, I am required to consider the best care for my patient, understand the risks versus benefit, and to be comfortable with the consequences of prescribing. The implications of the decision are serious, and it is not fair, nor appropriate, for me to make them alone. It is a team decision and includes the guardians of the person and the person themselves, as they will be required to provide informed consent (which they can withdraw at any time). In my experience, the lack of communication with family members is the source of the majority of issues arising from the prescription of antipsychotics."

I remember the case conference with John's brother and sister-in-law very clearly. Tears are shed, nostalgia for the old John is felt and we are determined to do the best for him. We had a discussion about the risks and benefits of medicines, and also obtained informed consent. Best care for John is decided to be to maximise his quality of life rather than aiming for as long a life as possible. 

The risks of admitting him to hospital are weighed up. Hospital for people with changed behaviours is sometimes necessary, but hospitals are challenging environments for them. The set-up of the buildings, change in environment and the focus of the staff makes it very confusing for people with poor cognition. I have a lot of respect for what hospitals, and the people there, do but the place to manage changed behaviours is in aged care homes with skilled staff. 

So, we do all we can to keep John out of hospital. John's paranoia and delusions are an indication for antipsychotics, and it is decided that they are to be tried.

Risperidone is the only TGA-approved and PBS-listed antipsychotic for behavioural disturbances,⁷ and that is prescribed for John. Because his aggression is severe and it is ideal to keep him out of the hospital, I start with the reasonably aggressive (but not unacceptable) dose of 0.5 mg twice daily. In other circumstances, I would start with 0.25 mg twice daily.⁷

There is some evidence for SSRIs for agitation, particularly citalopram.⁸ As agitation may explain some of John’s behaviours, I keep the use of citalopram in mind.

Critically, there now needs regular follow up and review. Two days later, I see John to assess him for any signs over sedation and Parkinsonism.

John seemed to be coping well with the medication and was peaceful and happy when I saw him.

I would love to say that he settles down, becomes content and his behaviours subside. That happens fairly often, and there is always hope that the medications are effective. It could have been John's story in this case, and that makes for an abrupt, and satisfactory, conclusion to this article.

We reviewed John regularly in the first 12 weeks after prescribing of risperidone. He initially settled for a while, and then the hallucinations and aggression worsen. It is a heartsink moment when the desired outcome is not occurring.

What to do then? The key is to take a breath, centre oneself and start again. What are the triggers and stressors? Is there a medical problem underlying his outbursts? Is the medication making him worse rather than better?

In John's case, nothing seems to have changed, and there are no apparent triggers. Ending this story without the desired outcome is as real as it gets. Managing changed behaviours is an ongoing problem. The next thing I am going to try is to increase the dose of risperidone. It is also important to continue working with the care team to keep trialling non-pharmacological strategies in the context of person-centred care to keep John as comfortable as possible, especially during acute changes in his behaviour. I am not alone to make the decision however, I work with a team at the home and his brother, and together we will work out what is best for John.

“Managing changed behaviours is challenging but it is also satisfying and purpose-filled. Sometimes there are wins, and sometimes losses. I have had both.

Where is John today? His situation is not a win yet but will be. He is on too many medications, but in time they will be reduced and ceased and with a bit of luck, there will be glimmers of who he used to be. That time will be both positive and sad as it implies his dementia will progress beyond the changed behaviours stage.

Dementia is a terrible disease, and we, as clinicians, are privileged to make a difference to those people and their families. One of the most profound takeaways from my University days was a doctor-lecturer saying 'You can always do something. You may not be able to cure the disease or fix the ailment, but you can always do something, even if it is just being there.'”