Living with uncertainty: Informational needs of people with mild cognitive impairment and families
Tracks
Ballroom 3
Best practice
Chronic Conditions
Diagnosis
Informal caregivers
Wellness / Well Being
| Wednesday, November 13, 2024 |
| 3:00 PM - 3:15 PM |
Speaker
Dr Meredith Gresham
Visiting Fellow
Cheba, Unsw Sydney
Living with uncertainty: Informational needs of people with mild cognitive impairment and families
Abstract
Background
Mild Cognitive Impairment (MCI) is characterised by changes in memory or thinking, without significant functional impairment that do not reach diagnostic criteria for dementia. There are almost no treatments or services for people with MCI in Australia. Patients and families report living in a state of prognostic uncertainty following diagnosis. This presentation provides initial findings of a study on the views of people with MCI, family supporters and medical practitioners regarding helpful information following diagnosis, with the intention to develop future informational resources.
Methods
We employed qualitative methods using triadic interviews with people with MCI diagnosed within 3 years, their main family supporter and diagnosing medical practitioner.
Results
Ten interviews, three with people with MCI, their family supporter and four medical practitioners were conducted and analysed. Medical practitioners provided verbal or self-produced resources outlining lifestyle changes that may benefit brain heath including diet, dietary supplements, exercise and social stimulation, while emphasising treatment of co-existing conditions or medication that may impact cognitive function. Patients’ and family supporters’ experiences of diagnosis, understanding of prognosis and acceptance of recommended lifestyle changes were mediated by their pre-existing beliefs about cognitive changes in older age, previous experience of dementia, personal coping resources and available social supports.
Implications
Interim findings are consistent with well-established models of cognitive appraisal of stressors and illness related beliefs. Addressing pre-existing beliefs about cognitive ageing, patient-perceived prognosis of MCI, personal coping styles, availability of social and other health-related resources appear to be important to facilitate implementation of practical lifestyle recommendations.
Mild Cognitive Impairment (MCI) is characterised by changes in memory or thinking, without significant functional impairment that do not reach diagnostic criteria for dementia. There are almost no treatments or services for people with MCI in Australia. Patients and families report living in a state of prognostic uncertainty following diagnosis. This presentation provides initial findings of a study on the views of people with MCI, family supporters and medical practitioners regarding helpful information following diagnosis, with the intention to develop future informational resources.
Methods
We employed qualitative methods using triadic interviews with people with MCI diagnosed within 3 years, their main family supporter and diagnosing medical practitioner.
Results
Ten interviews, three with people with MCI, their family supporter and four medical practitioners were conducted and analysed. Medical practitioners provided verbal or self-produced resources outlining lifestyle changes that may benefit brain heath including diet, dietary supplements, exercise and social stimulation, while emphasising treatment of co-existing conditions or medication that may impact cognitive function. Patients’ and family supporters’ experiences of diagnosis, understanding of prognosis and acceptance of recommended lifestyle changes were mediated by their pre-existing beliefs about cognitive changes in older age, previous experience of dementia, personal coping resources and available social supports.
Implications
Interim findings are consistent with well-established models of cognitive appraisal of stressors and illness related beliefs. Addressing pre-existing beliefs about cognitive ageing, patient-perceived prognosis of MCI, personal coping styles, availability of social and other health-related resources appear to be important to facilitate implementation of practical lifestyle recommendations.
Biography
Dr Meredith Gresham is an occupational therapist whose practice has focused on dementia care in residential aged care, hospitals, community, rehabilitation, and palliative care settings. She has expertise in the design of the physical environment and the use of assistive technology to improve the function and independence of people living with dementia. Her research interests span education and training with family carers of people living with dementia, reablement interventions for people with mild to moderate dementia, development of new service models for older people with very severe and persistent behavioural and psychological symptoms of dementia and providing holistic interventions for the management of behavioural and psychological symptoms of dementia. Two programs developed by Dr Gresham have been nationally adopted by the Australian Government: Units and supported transitional programs for people with very severe and persistent behavioural symptoms of dementia, which involve contributions from both federal aged care and state-based health funding, and residential comprehensive, intensive carer training and support in the early post dementia-diagnosis period. Recently, she successfully co-ordinated the 5-country, 10-university COGNISANCE project which aims to improve the communication of dementia diagnosis and post diagnostic support. She co-wrote the Forward with Dementia website and resources for post diagnostic support which has attracted over 13, 000 unique visitors since its launch in September 2021. Currently she is conducting a public health campaign as part of the Timely Diagnosis project, which aims to support people with concerns about cognitive impairment to seek early diagnosis and appropriate support. Dr Gresham was a 2022 recipient of an AAG Hal Kendig Research Development Award to investigate what information is wanted and needed to support people diagnosed with mild cognitive impairment and their families.
Session Chair
Sze-Ee Soh
Senior Lecturer
Monash University
