The Relationship Between Dementia Diagnosis and Self-Harm

A diagnosis of dementia can completely turn someone’s life around. This change can bring a lot of emotions with it. A recent study has shown that people diagnosed with dementia are more likely to self-harm within the first six to 12 months after their initial diagnosis. There is a need to highlight how health services can offer more follow-up support during this crucial period. Experts in medicine, psychiatry, and psychology at UNSW Sydney looked at NSW hospital data captured for more than 180,000 people admitted to the hospital between 2001 and 2015.

In what is believed to be the largest study of its kind, the researchers analyzed statistics relating to two cohorts of patients admitted to the hospital: 154,811 people recorded as having dementia, and 28,972 people admitted for self-harm injuries.

“While smaller studies and anecdotal evidence had previously suggested a link between dementia diagnoses and self-harm, the NSW hospital data supports the findings in a large population setting”, says UNSW Medicine & Health’s Dr. Adrian Walker, the lead author of the study.

“We were interested in finding people who came to those health services and had been diagnosed with dementia to see if we could find out, what are the rates and predictors of self-harm among people living with dementia?” Dr. Walker says.

“We know that that’s an important question because dementia itself is associated with not only a lot of neurological changes but also a lot of grief and a lot of anxiety. And it can create this perfect storm of factors that may contribute to self-harm.”

When the researchers examined the data, they discovered that 692 of the people diagnosed with dementia by health services (hospitals and outpatient facilities) were readmitted to the hospital for self-harm.

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Men are Under-Represented at The Crossroad of Dementia and Self-Harm

Women accounted for the majority of both people initially admitted to the hospital with dementia (60%) and initially admitted because of self-harm (53%).

However, when researchers looked at the number of people who went on to self-harm after being admitted initially with dementia, the ratios between the sexes took a turn, with men making up 60% of those admissions.

“Generally, women tend to be over-represented in people diagnosed with dementia, as well as people who self-harm, compared to men,” says Dr. Walker.

“The fact that there are more men at the intersection of self-harm and dementia is concerning, though we should also be careful not to forget the substantial number of women living with dementia who self-harm.”

When the researchers dug deeper into the data, they discovered that self-harm episodes for both men and women appeared alarmingly soon, within 12 months of the first hospital visit for dementia.

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Time for Health Services to Take Dementia Diagnosis Seriously

Scientia Associate Professor Simone Reppermund is a psychologist with UNSW’s Department of Developmental Disability Neuropsychiatry and supervising author of the study. She says the figures suggest health services, including primary care physicians, should view dementia diagnoses with a new sense of urgency.

“The message to clinicians and indeed, the outside world, is that it is really important, once a person gets a diagnosis of dementia, that psychosocial and mental health supports are kicking in straight away,” she says.

“We would like to see people who are initially diagnosed get the support very early on to prevent self-harm and suicide later on. Even without dementia, men 85 and over are in the age group with the highest age-specific suicide rates, so it’s doubly important we offer extra care for people diagnosed with dementia.”

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Someone Who Lives to Tell the Tale

The researchers also interviewed a number of advocates, some of whom had dementia and others who were carers.

Mr. Stephen Grady was one of the advocates with lived experience of dementia and spoke of his own reaction when he was first diagnosed at the relatively young age of 60 while enjoying a successful career as a measurement scientist.

“So here was me as a very high functioning member of society, one of the leading people in my field,” Mr Grady says.

“And then suddenly after being diagnosed, it felt like I went from a valuable contributor to society to having no value at all. So, there's this whole question of, okay, ‘Is your life over, is it still worth living?’. These are the kinds of questions that I believe a lot of us ask ourselves, but it's only when you find the value in your life again, that you can refute them.”

Mr. Grady, now 68, says the hospital data confirms what he has long known anecdotally as an advocate for people living with dementia: that the first 12 months after diagnosis are crucial.

Could Self-Harm be a Risk Factor for Dementia?

The researchers also searched for signs of a reversal of the trend, asking how many individuals with no prior history of dementia went on to develop dementia after being initially admitted due to self-harm.

They saw a similar story to the path from dementia to self-harm: again it was more men – 475, or 55% of all those previously admitted for self-harm – who went on to develop dementia. But with 395 women who traveled the same path from self-harm to dementia diagnosis, it is clear that this is an issue affecting both sexes.

“At this stage, we should also be careful not to read too closely into the causal relationship between self-harm and dementia,” says Dr Walker.

“Whether self-harm might lead to dementia, or dementia might lead to self-harm, is still an open question. Indeed, it could be both, and it could also be neither – there could be something else going on. But what is clear in the numbers is that the two are linked.”

Other findings of the research were:

• Those living with dementia who self-harmed tended to be younger at their initial dementia diagnosis than those with no record of self-harm.
• Being divorced, widowed, or separated showed a lower risk for people with dementia to present to the hospital for self-harm than those that were still living with a partner.
• People living with dementia with complex psychiatric profiles also had a higher risk of presenting to the hospital for self-harm.

The findings were reported in the paper published recently in the journal Alzheimer's & Dementia: The Journal of the Alzheimer's Association.

What This Means for the Future

The research team plans to extend these findings by drilling deeper into the health outcomes for people living with dementia who self-harmed. Specifically, they are interested in how health service use impacts self-harm.

“Self-harm indicates substantial mental health distress, so it would be good to know how mental health services respond to self-harm in people living with dementia,” says Dr. Walker.

Reference:

1. Risk factors for dementia and self-harm: A linkage study - (https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.13080)

Source-Medindia