How do carers adjust to caring for people with a LD & Dementia? 0.3
Research type
Research Study
Full title
An exploration of the experience of psychological adjustment amongst family and formal carers for people who have a learning disability (LD) and are living with dementia.
IRAS ID
320996
Contact name
Clarissa Giebel
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
0 years, 3 months, 2 days
Research summary
People who have a learning disability (LD) are now living longer and as a result there is an increased risk of developing dementia, especially those who have Down Syndrome. There are common symptom similarities between the different types of dementia, however dementia will impact every individual differently. There are a number of important differences to consider for people who also have a LD such as earlier onset, quicker progression, comorbid health conditions, delayed diagnosis due to pre-existing impairment and differing presentation. Developing dementia in addition to a LD has a compounding impact for the individual and their family, friends and various other support systems.
Available research into family carers of people living with dementia highlights a significant focus on spousal relationships and often fails to include other family members which excludes the LD population considerably. Existing research exploring carer’s experiences for people who have this dual diagnosis is lack. However, current findings suggest a dementia diagnosis has significant effects on carer wellbeing. Government policy aimed to tackle dementia often overlooks and neglects those who also have a learning disability despite of dementia prevalence within this population. In order to address the identified gaps and increase awareness of LD and Dementia, this study aims to explore the experience of psychological adjustment (ability to comprehend, adapt to, and accept changes in functioning) amongst family and formal carers for people who have a LD and are living with dementia.
Objectives for this study will include:
• Explore factors that facilitate or hinder the psychological adjustment of family and formal carers for people who have a LD and are living with dementia.
• Impact of covid-19 on carer’s psychological adjustment to diagnosis and their role- pre and post covid.By further understanding the psychological adjustment experiences of carers, support can be tailored to meet carer needs across the trajectory of dementia and their caring journey.
REC name
North West - Liverpool Central Research Ethics Committee
REC reference
23/NW/0172
Date of REC Opinion
18 Jul 2023
REC opinion
Further Information Favourable Opinion