A free handbook developed by Dementia Support Australia to improver carer understanding about behaviours ranging from anxiety and apathy to agitation and aggression experienced by people living with dementia has been downloaded or accessed in hard copy almost 5000 times.

The Carer Handbook for Understanding Changed Behaviours details the various behaviours, their potential causes and possible responses individually. There are also links to videos.

Most of the estimated 435,000 Australians living with dementia will experience changes in their behaviour and for those involved in their care, these changes may be distressing.

A soft launch of the handbook on March 26 has resulted in 4152 downloads times as of mid-June. Another 824 orders have been received for the hard copy version. To access your free copy, click here.

DSA General Manager Marie Alford said the popularity of the book suggests there is a broad need for a resource produced in easily accessible language that can help carers, including practical tips to try at home.

“There are many reasons why behaviour can change for a person living with dementia, understanding why is key to supporting how we respond,” Marie said

“This handbook enables carers to support their own learning at home – so that they can be better equipped to know why something might have changed.”

Content was developed by DSA with the support of geriatrician Professor Sue Kurrle, one of Australia’s leading voices on dementia. It also draws on DSA’s experience supporting people living with dementia for almost a decade.

Steve Wright, 76, of South Launceston, a carer for his wife Dianne, 75, since her Alzheimer’s disease diagnosis 15 years ago, was involved in reviewing the handbook prior to its release.

He urged every carer, both employed or in a family context, to read the handbook and keep a copy handy.

“What a fantastic guide. It is easy to read and reminded me of what I know about behaviour but had forgotten,” Steve said.

“It certainly has improved my knowledge and understanding.”.

Steve said his wife’s behaviours had changed noticeably in the past year and the handbook has been useful in outlining advice on what may be triggers and some tips on how best to respond.

He has asked for a dozen hard copies to share. “I have at least that many people including carers and professionals and doctors who I would like to personally introduce to this handbook”.

The 25-page handbook explains how dementia affects everyone differently and there are a range of reasons for changed behaviours, officially referred to as Behavioural and Psychological Symptoms of Dementia. These non-cognitive symptoms include anxiety, apathy, sleep changes, walking or pacing, distress during personal care, wanting to leave or go home, agitation, aggression, disinhibition and hallucinations.

Behaviours, which are never deliberate, may be due to physical changes in the brain or other triggers such as pain, discomfort, confusion, overstimulation, fatigue, unmet needs or even something as simple as hunger or going to the toilet.

DSA is a free advisory and support service financed by the Australian government and led by HammondCare, a national leader in dementia care, support, treatment and research.