What is the recommended approach for assessing an individual with concerns for changes in cognition, personality, or behavior and evaluating the capacities of a committed relationship to cope with progressive neurological conditions?

Assessment of Cognitive, Personality, and Behavioral Changes in Progressive Neurological Conditions

A comprehensive multi-tiered evaluation involving both the patient and care partner is essential for accurately assessing cognitive, personality, or behavioral changes and evaluating a relationship's capacity to cope with progressive neurological conditions. 1

Initial Assessment Framework

Patient-Centered Evaluation

1. Establish a partnership with both patient and care partner 1

   • Develop shared goals for the evaluation process
   • Assess capacity to engage in the goal-setting process
   • Include both patient and care partner in all aspects of assessment 1

2. Cognitive Assessment Tools 1

   • Brief screening tools for initial assessment:

     • Mini-Cog
     • Clock Drawing Test (CDT)
     • Memory Impairment Screen (MIS)
     • Four-item version of MoCA (Clock-drawing, Tap-at-letter-A, Orientation, Delayed-recall)

   • Comprehensive assessment tools when more time is available:

     • Montreal Cognitive Assessment (MoCA) - preferred for mild cognitive impairment
     • Mini-Mental State Examination (MMSE) - better for moderate dementia
     • Modified Mini-Mental State (3MS) examination
     • Rowland Universal Dementia Assessment Scale (RUDAS)

3. Neurological Examination 2

   • Assess level of consciousness, pupillary responses
   • Evaluate strength, tone, coordination in all extremities
   • Test deep tendon reflexes and pathological reflexes
   • Observe for ataxia, asymmetry, or abnormal movement patterns

Care Partner/Informant Assessment

1. Standardized Informant Tools 1

   • For cognitive changes:

     • Everyday Cognition (ECog)
     • Ascertain Dementia 8 (AD8)
     • Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE)

   • For functional changes:

     • Pfeffer Functional Activities Questionnaire (FAQ)
     • Disability Assessment for Dementia (DAD)
     • Lawton-Brody IADL scale
     • Amsterdam IADL questionnaire

   • For behavioral/personality changes:

     • Neuropsychiatric Inventory (NPI-Q)
     • Mild Behavioral Impairment Checklist (MBI-C)
     • Patient Health Questionnaire-9 (PHQ-9) for mood changes

2. Relationship Capacity Assessment

   • While not explicitly covered in standard guidelines, assessment should include:
     • Care partner's understanding of the condition and its progression
     • Available support systems and resources
     • Care partner's own health status and coping mechanisms
     • Relationship dynamics before and after symptom onset

Advanced Assessment Considerations

When to Refer for Neuropsychological Evaluation

Neuropsychological evaluation is indicated when: 1

• Office-based cognitive assessment is not sufficiently informative
• Patient reports concerning symptoms but performs normally on basic testing
• There are confounding factors such as:
  • High premorbid intelligence
  • Cultural/language barriers
  • Educational differences
  • Sensory difficulties
  • Psychiatric comorbidities

Benefits of Neuropsychological Assessment 1

• Provides comprehensive assessment across cognitive domains
• Helps determine extent of cognitive change over time
• Offers tailored recommendations for:
  • Compensating for specific impairments
  • Home safety and driving evaluations
  • Activity of daily living accommodations
• Assists family in understanding patient's level of impairment
• Guides planning for future care needs

Longitudinal Assessment

• Serial cognitive assessments improve diagnostic accuracy 1
• Consider follow-up evaluations:
  • Annually if abnormalities are detected 1
  • Every 1-2 years for monitoring progression
  • When new symptoms emerge or existing symptoms worsen

Diagnostic Disclosure and Care Planning

1. Structured Communication Process 1

   • Honestly and compassionately inform both patient and care partner about:
     • Name, characteristics, and severity of the cognitive-behavioral syndrome
     • Likely underlying disease(s)
     • Disease stage and expected progression
     • Treatment options and expectations
     • Safety concerns

2. Relationship-Focused Planning

   • Assess which activities of daily living require assistance
   • Suggest accommodations to support maximal functioning
   • Provide recommendations for home safety
   • Connect to community resources and support services
   • Discuss advance care planning appropriate to stage of illness

Common Pitfalls to Avoid

• Relying solely on cognitive screening without functional assessment 1
• Failing to include a reliable informant in the assessment process 1
• Overlooking behavioral and personality changes as early indicators 3
• Misinterpreting drug-induced findings or psychiatric symptoms 2
• Neglecting to assess the care partner's needs and coping abilities 4
• Inadequate documentation of neurological examinations 2
• Failing to perform serial examinations to detect changes over time 2

By implementing this comprehensive approach to assessment, clinicians can better support both the individual with cognitive, personality, or behavioral changes and their care partner through the challenges of progressive neurological conditions.