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Table 4 Frequency of the most bothersome or challenging issues to patients and care partners

From: Assessing what matters most to patients with or at risk for Alzheimer’s and care partners: a qualitative study evaluating symptoms, impacts, and outcomes

Most bothersome or challenging issue category, n (%)

AD classification

Total (N = 60)

Group 1 (n = 12)

Group 2 (n = 12)

Group 3 (n = 12)

Group 4 (n = 12)

Group 5 (n = 12)

Memory/forgetfulness (includes short-term memory; losing or misplacing things; forgetting medications; forgetting why you walked into a room; forgetting to turn off water or appliances; relying on lists, reminders, or others; long-term memory, other/general memory issues, forgetting friends/family)

7 (58.3)

5 (41.7)

5 (41.7)

7 (58.3)

1 (8.3)

25 (41.7)

Othera

3 (25.0)

1 (8.3)

5 (41.7)

9 (75.0)

7 (58.3)

25 (41.7)

Changes in behavior or personality (includes angry outbursts [getting mad], being impatient/irritable, being suspicious, anxiety, feeling scared, not wanting to do things you enjoyed before, feeling depressed or sad, feeling frustrated or flustered, getting upset, and other behavior or personality changes [n = 3])

1 (8.3)

1 (8.3)

3 (25.0)

7 (58.3)

2 (16.7)

14 (23.3)

Dependence (includes not being able to care for yourself, not being able to drive, and needing to move out of your home)

2 (16.7)

1 (8.3)

1 (8.3)

1 (8.3)

3 (25.0)

8 (13.3)

Communication and language (includes difficulty following conversations, losing train of thought, difficulty finding words and names, not making sense when speaking)

2 (16.7)

1 (8.3)

1 (8.3)

2 (16.7)

1 (8.3)

7 (11.7)

Concentration and clear thinking (includes difficulty focusing/paying attention, difficulty managing money, difficulty making decisions)

2 (16.7)

3 (25.0)

1 (8.3)

0 (0.0)

0 (0.0)

6 (10.0)

Awareness of day/time/people (includes knowing where you are and knowing the direction you are going)

1 (8.3)

2 (16.7)

1 (8.3)

0 (0.0)

0 (0.0)

4 (6.7)

Planning (includes difficulty understanding instructions)

0 (0.0)

0 (0.0)

0 (0.0)

0 (0.0)

1 (8.3)

1 (1.7)

  1. AD Alzheimer’s disease
  2. Note: Information was collected from patients only from groups 1, 2, and 3; from care partners and patients (when able to self-report) in group 4; and from care partners only in group 5. Data shown are the number and percentage of individuals endorsing a symptom in each group and overall
  3. aThe “other” category included issues such as what the future holds/uncertainty/noticing a decline (n = 7), patients feeling as though they are or could become a burden (n = 6), care partners’ need to repeating themselves (n = 4), care partners’ frustration/needing patience (n = 2), care partners’ difficulty keeping on top of patient and family needs and schedules (n = 2), the patient’s inability “to do anything” (n = 1), safety issues (n = 1), and the patient sleeping a lot (n = 1)