Enabling
Activity
Comparing Mealtime Experiences for People Living with Typical Alzheimer’s
Disease & Posterior Cortical Atrophy.
Rachel Woodbridge, Dr. Mary Pat Sullivan, Prof. Mary Gilhooly
Aiming To:
Posterior Cortical Atrophy (PCA) is a visual variant of dementia
involving a ‘progressive decline in visuospatial,
visuoperceptual, literacy & praxic skills’ (Crutch et al,
2012), estimated to affect around 5% of the Alzheimer’s (AD)
population (Snowdon et al, 2007).
Explore the difficulties and compensatory strategies used
during mealtimes; comparing the experiences of those with
typical Alzheimer’s disease and Posterior Cortical
Atrophy and their spousal caregivers.
Qualitative research capturing the everyday experiences of
those with PCA compared to typical AD is needed, given recent
quantitative data suggesting those with PCA are significantly
more impaired in everyday functional abilities (Shakespeare et
al, 2015). This doctoral project offers an in-depth exploration of
the mealtime activity aiming to understand how individual
symptoms affect everyday functioning during meals and the
types of environmental strategies individuals and spousal carers
use to cope with this day-to-day activity at home.
We are here
Sample:
ICF Model,WHO (2001):
Activity
(Mealtime)
Procedure
Analysis
Stage 1: Intensive
interviewing with 20
dyads (10 PCA/10 tAD)
Two stages of
interviews-
Stage 1: day-to-day
difficulties & coping
strategies
Stage 2: mealtime
difficulties & coping
Informed by
Constructed
Grounded Theory
(Charmaz, 2006),
open-coding/memo
writing during data
collection
Stage 2:
Observation using
Video Recording
Methods
(4-6 dyads)
Observation of
breakfast, lunch,
dinner activity at
home
Video analysis
exploring use of
physical/social
environment
In-depth
consultations with
PCA/tAD dyads on
emergent themes
Revisiting codes and
refining theoretical
framework
Stage 3: Reflective Interviews
Health Condition
(Dementia)
Body Functions &
Structures (PCA vs. tAD)
Method
(2-4 dyads)
Participation
(Eating/Social)
Some Emerging Themes: Stage 1
• Difficulties: adjusting to a changing identity, drawing
Personal Factors
Theoretically informed by
the ICF framework (WHO,
2001) whereby the
environment has a ‘facilitating/
hindering’ impact on everyday
activity functioning. Project
explores similarities and
differences in difficulties with
interacting with the external
environment during mealtimes,
and in the way environmental
strategies are used to
compensate for difficulties.
Informing future intervention
development (with UCL)
targeted at the physical/social/
attitudinal environment.
Environmental
(Physical/Social/
Attitudinal)
back from social situations, increasing difficulties in managing food items on plate & losing motivation/
interest in food.
‘I’m not actually eating the meal at all, I’m just swallowing up whatever’s
on the plate’ -Female, PCA Patient
•
Coping Strategies: comparing to others situations,
carer anticipating and responding to challenges, routined
mealtime structures, adapting utensils/meal type
environment & providing music etc.
‘Sometimes I can put something back on the plate and she doesn’t know
I’ve done it… but if I directly interfere that can endanger a bit of
resentment’ -Male, PCA Carer
This project is sponsored by a ESRC/NIHR project with
UCL: ‘Seeing What They See’ aiming to understand the
functional impact of dementia related visual impairment and
to develop supportive home based interventions.
Rachel.Woodbridge@brunel.ac.uk
-Crutch, S. J., et al 2012). Posterior cortical atrophy. The Lancet Neurology, 11(2), 170-178.
-Charmaz, K. (2006). Constructing Grounded Theory: A practical Guide through Qualitative Analysis.
-Shakespeare, T.J., et al (2015). Pronounced impairment of everyday skills and self-care in posterior cortical atrophy, J. Alzheimers Dis, 43(2), 381-384
-Snowden, J.S., et al (2007). Cognitive phenotypes in Alzheimer’s disease and genetic risk. Cortex, 2007; 43(7): 846-857
-World Health Organisation (2001). The international classification of functioning disability and health. Geneva: World Health Organization.