Older autistic adult's experience of memory changes
Research type
Research Study
Full title
Exploring older autistic adult's experience of memory changes, receiving a dementia diagnosis, and navigating memory services.
IRAS ID
351913
Contact name
Charlotte Cook
Contact email
Sponsor organisation
Royal Holloway, University of London
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Research Summary
The project aims to explore the experiences of older autistic adults as they navigate the process of receiving a diagnosis for mild cognitive impairment or early dementia. Many older autistic adults have lived without an autism diagnosis for most of their lives, which means their needs and challenges are less likely to be met and recognised and met within services. This can also make it harder for them to understand their identity and challenges as they age.Through interviews with older autistic adults, the aim of this project is to explore how they make sense of their memory changes, their experiences with memory assessments and memory services, and the unique challenges they face compared to non-autistic older adults with similar memory problems.
I expect to gain insights into the specific needs and concerns of older autistic adults regarding their memory and identity. This understanding could help improve support and services tailored for older autistic adults, ensuring their voices are heard and that they receive appropriate care as they navigate aging and memory difficulties.
Lay summary of study results
This project examined how older autistic adults experience changes in memory, their involvement in memory assessments and their interactions with NHS memory services.
Interviews were carried out with four older autistic adults and their caregivers to better understand these experiences. Participants described a range of difficulties associated with both autism and cognitive changes. One of the strongest messages was the feeling of not always being understood. Many felt that their communication style, behaviours or support needs were sometimes misunderstood by family members, professionals and healthcare services.
Experiences of memory services were mixed. Whilst many aspects of care were valued, the assessment process could also be challenging. Sensory factors such as noise, bright lighting, and busy environments often made appointments more difficult. Participants also reported that information was not always communicated in ways that suited their individual needs. At the same time, compassionate and person-centred interactions with staff were appreciated and helped people feel supported and reassured.
The interviews also highlighted the importance of identity. For some participants, understanding their autism later in life provided a new perspective on past experiences and encouraged greater self acceptance. Others spoke about feeling overlooked as they grew older or finding it difficult to adjust to changes in their independence.
A further theme was the uncertainty associated with memory changes. Participants described feeling less confident and having less control over daily life as cognitive difficulties increased. Many developed practical strategies such as using routines, reminders, calendars, and written notes to help manage everyday tasks and maintain stability. Despite this, participants demonstrated resilience and determination in adapting to changes, advocating for their needs and preserving a strong sense of who they are.
REC name
East of England - Cambridge East Research Ethics Committee
REC reference
25/EE/0036
Date of REC Opinion
19 Mar 2025
REC opinion
Further Information Favourable Opinion