The Dementia Debate: Capacity, Quality of Life, and Assisted Dying
The debate surrounding the extension of assisted dying options to individuals with dementia continues, with differing perspectives emerging regarding the capacity for engagement and quality of life in advanced stages of the condition. While some advocate for expanded access based on experiences of suffering and family burden, others emphasize the continued personhood and potential for meaningful connections for those living with dementia.
Calls for Extended Assisted Dying Options
Novelist Ian McEwan has voiced support for extending assisted dying options to individuals with dementia. He cited his mother's experience, describing it as distressing and a considerable burden on family members, as a basis for his position.
Perspectives on Continued Personhood and Engagement
In contrast, several individuals and organizations have presented observations and research indicating that people with dementia often retain capacities for understanding and engagement, even in advanced stages.
One author, having cared for parents with vascular dementia and Parkinson's with milder dementia, questioned the perception that individuals in advanced stages are "dead." The author observed that both parents, despite physical limitations and communication challenges, maintained the ability to comprehend and engage with stories, poems, and novels until the end of their lives. An example provided was the author's father, who, despite appearing disengaged, noticed when memoirs were not read chronologically.
The author concluded that a lack of verbal communication should not be presumed as an inability to understand or engage.
These observations align with sentiments from readers responding to a related article on dementia experiences. Rowan Adams highlighted that individuals with vascular dementia remain 'alive and themselves' even in advanced stages, disputing the belief that they are 'as good as dead.' Adams noted that daily reading and music engaged their mother, who showed visible enjoyment despite limited verbal communication. Adams also mentioned that vascular dementia can cause dysphagia.
Therapeutic Approaches and Positive Outcomes
Evidence suggests various methods can facilitate continued engagement and improve well-being for individuals with dementia:
- Reading Aloud: The Reader charity's reading groups demonstrate that reading aloud can significantly enhance communication and reduce symptom severity in people living with dementia, as reported by Philip Davis at the University of Liverpool. This practice has been shown to contribute to their well-being.
- Specialized Books: Matt Singleton, a gerontologist and director of Cognitive Books, developed illustrated rhyming books with optional audio and cognitive stimulation therapy (CST) exercises for individuals with mild to moderate dementia. Singleton observed that this approach, supported by Alzheimer's Society, enabled independent reading for some and shared enjoyment for others, with one reported outcome being his own father's ability to recite passages from memory.
- Music: Catherine Roome described using music to connect with her sister, who had Alzheimer's. Playing a shared childhood song allowed her sister, despite severe memory loss, to join in and experience moments of release and joy.
- Photographs and Letters: Jane Linden recounted successful engagement with her mother in the late stages of dementia through looking at Victorian children's photographs and receiving letters.
Conclusion on Meaningful Connections
Advocates against extending assisted dying to dementia patients, including the unnamed author, maintain that meaningful connections and pleasures can still exist. They define death by the physical cessation of function, acknowledging that severe degeneration, such as in advanced Alzheimer's, may eventually make certain connections impossible.
This perspective underscores the importance of continued efforts to engage and support individuals living with dementia, based on the belief in their enduring personhood.