Literary Alzheimer’s: A qualitative feasibility study of dementia-friendly book groups

Despite the estimated 47 million people living with dementia and despite reading being our most

popular cultural activity, there is lack of research around how people with dementia experience

reading and what tools can be used to help them to enjoy a good read. Current IFLA Guidelines for

Library Services to Persons with Dementia are unhelpful, as they encourage the stigmatisation and

infantalisation of the adult with dementia. There have been few strategic efforts by New Zealand

libraries to engage those living with dementia to continue reading. Nelson and Canterbury libraries

are some exceptions, providing ‘dementia-friendly’ book groups.

This report summarises the findings of a qualitative study, which asks how people living with

dementia experience reading literary fiction and how such activity is best facilitated for creativity

and enjoyment. The findings of the study refute Ribot’s ‘regression hypothesis’ of dementia. What

was striking in both focus groups was the preserved command and appreciation of language, and

the stimulation of sharing the “wonderful words” of the featured author Charles Dickens. To support

memory deficits, while preserving the stimulation of the original language, the following modifications

were found to be helpful: providing a cast of characters, reducing the amount of text, and

regularly repeating referents.