Dementia brings us some of the most difficult questions we as individuals and society can ever face, questions about essential aspects of humanity. To help people living with dementia have the best lives possible, along with their carers, means we need to talk openly about suffering and distress.
While a lot of people think of dementia as simply forgetting, an estimated 60% to 90% of people with dementia will experience neuropsychiatric symptoms throughout their disease, usually as their cognitive impairment becomes more severe.
Dementia can be a scary place. Much of the work our brains do involves receiving, making sense and responding to the information around us. In advanced dementia, there can be problems with this at multiple levels. We think of our memories as going back, but they actually help us make sense of the present and imagine the future. When you wake in the morning, it is the memory of the coffee that becomes anticipation of pleasure that prompts you to go and make it. Think of the joy at seeing a loved one, now think how tragic it would be to lose that.
People with advanced dementia can have difficulty interpreting and communicating unpleasant sensations, like pain, and instead experience distress which can manifest as other behaviours. Sometimes I see agitated patients who just look scared, scared because nothing makes sense and no one looks familiar.
These neuropsychiatric symptoms can include paranoia, hallucinations, anxiety and insomnia. Some people living with dementia will experience personality change, and can become more disinhibited and prone to anger or rudeness, even if this is completely out of keeping with their values. Some will even become violent to their carers, which can cause huge distress and make things like personal care incredibly challenging.
Behavioural and psychological symptoms of dementia (BPSD) can lead to challenges in care, both for paid and unpaid carers. Families often use all their practical and emotional resources, but will become burnt out. The neuropsychiatric symptoms can be the tipping point that leads to the difficult decision for families to place their loved ones in residential care.
It is sadly common to see people with BPSD in emergency departments, sent in by their family or care facility because their behaviours are beyond what they can manage, and there is nowhere else to go. They are invariably sedated and due to the confusing and highly stimulating hospital environment, their distress gets worse. Some will stay for weeks or months while we try to find an appropriate care facility.
These people are in hospital because it is the only option. They are people who deserve care, but it is not good for them, or the health system, when they spend weeks on an acute hospital ward.
There are services available to help carers for people with dementia experiencing distress, who provide tiered levels of support. There are also some highly specialised residential care facilities, but these are rare.
I have seen many loved ones of people with dementia who feel alone, who feel they have failed their loved on or they are doing the wrong thing because their person is exhibiting distressing behaviours. Sometimes they even blame themselves. It is important to speak about living well with dementia, but if this means excluding the carers who are struggling, it crosses into toxic positivity. When we don’t talk openly about difficult things, it leads to shame, it worsens stigma. If we don’t talk about just how skilled the work is of caring for people living with dementia, we don’t provide the right supports and structures.
Grief is an important and valid emotion to acknowledge. The carers for people living with dementia can experience prolonged, complicated grief. Carers can find the care overwhelming. These stories need to be heard or things won’t get better.
The skill of looking after people with distress and agitation in dementia needs to be respected and taught. Aged care needs co-design between healthcare professionals and consumers. Carers for people living with dementia are important advocates for positive change.
None of us are in complete control of our health. This means that no matter what sort of rigid diet and lifestyle strategies anyone chooses, we are all at risk of dementia one day. We should care for our future selves, but we should also care for the people living with dementia now.
• Kate Gregorevic is a geriatrician working at a hospital in Melbourne. Her latest book is called Before Dementia: 20 Questions You Need to Ask
