Dementia Care Research and Psychosocial Factors

Area of Science:

• Neuroscience
• Neurology
• Psychology

Background:

• Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease impacting motor function.
• Cognitive and behavioral impairments affect up to 50% of ALS patients, with 15% developing Frontotemporal Dementia (FTD).
• Current cognitive screening tools for ALS are not routinely used, and patient/caregiver perspectives are underexplored.

Purpose of the Study:

• To explore patient and caregiver attitudes toward cognitive screening in ALS.
• To identify barriers and facilitators to cognitive testing acceptance and integration.
• To inform patient-centered approaches for cognitive screening in ALS.

Main Methods:

• Semi-structured interviews were conducted with 10 ALS patients and 9 caregivers.
• Participants were recruited from Sheffield Teaching Hospitals and the UK Motor Neuron Disease Association.
• Reflexive Thematic Analysis was used to interpret diverse perspectives.

Main Results:

• Perceptions of cognitive testing were individual and context-dependent, with some viewing it as preparedness and others as a threat to autonomy.
• Emotional responses ranged from denial and fear to acceptance, with caregivers balancing support and patient autonomy.
• Practical barriers (travel, fatigue) and clinician communication significantly influenced decision-making and engagement.

Conclusions:

• A patient-centered approach is crucial for cognitive screening in ALS, considering emotional readiness, preferences, and logistics.
• Adaptive strategies include personalized communication, flexible testing, and ensuring actionable outcomes.
• Remote cognitive screening tools could enhance acceptance and accessibility, facilitating timely support.