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Table 5 Frequency of impacts reported by patients in groups 1, 2, and 3

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

Impact, n (%)

AD classification

Total (n = 36)

Group 1 (n = 12)

Group 2 (n = 12)

Group 3 (n = 12)

Mood or emotions have changed (e.g., is more frustrated, stressed, anxious, worried, impatient/irritable, angry, scared/frightened, overwhelmed, or sad/depressed)

8 (66.7)

6 (50.0)

9 (75.0)

23 (63.9)

Social activities or outgoingness have decreased (e.g., limits where he or she will go, prefers to stay at home, is less outgoing)

4 (33.3)

7 (58.3)

6 (50.0)

17 (47.2)

Daily activities have become more difficult to complete (e.g., has difficulty with cooking, performing household chores, running errands)

3 (25.0)

3 (25.0)

6 (50.0)

12 (33.3)

Working has become impossible or more challenging (e.g., stopped working or works less, has increased challenges or stress with work tasks and may have changed tasks to things that were easier to do/not as challenging for memory, planning to retire in the near future)

4 (33.3)

3 (25.0)

3 (25.0)

10 (27.8)

Leisure activities have decreased or ceased (e.g., stopped or limits hobbies, travel, volunteering)

5 (41.7)

1 (8.3)

4 (33.3)

10 (27.8)

Reliance on care partner has increased

0 (0.0)

3 (25.0)

6 (50.0)

9 (25.0)

Othera

2 (16.7)

5 (41.7)

1 (8.3)

8 (22.2)

Driving has become impossible or more challenging (e.g., gets lost while driving, has trouble with night driving, does not drive far distances, needs to drive less or stop driving, uses more public transportation instead of driving)

1 (8.3)

2 (16.7)

3 (25.0)

6 (16.7)

Future plans and arrangements have been made (e.g., has performed estate planning, retirement, living arrangements, financial plans)

3 (25.0)

2 (16.7)

1 (8.3)

6 (16.7)

Sleep is disturbed

3 (25.0)

1 (8.3)

2 (16.7)

6 (16.7)

Assistance with finances or paying bills is needed

0 (0.0)

2 (16.7)

2 (16.7)

4 (11.1)

Assistance with personal hygiene is needed (e.g., requires help with showering and bathing)

0 (0.0)

0 (0.0)

2 (16.7)

2 (5.6)

Living full-time with family other than spouse/partner has become necessary

0 (0.0)

0 (0.0)

1 (8.3)

1 (2.8)

  1. Note: Data shown are the number and percentage of individuals endorsing an impact in each group and overall
  2. aThe “other” category included impacts such as everything happening at a slower pace (n = 2 [group 1], n = 1 [group 3]), feeling like there is nothing he or she can do to make things better (n = 1 [group 1]), not feeling comfortable going places at night (n = 1 [group 1]), needing to explain what he or she wants to say when unable to find the right word (n = 1 [group 1]), checking to make sure appliances and lights are not left on (n = 1 [group 1]), running late due to misplacing things (n = 1 [group 1]), handwriting has declined (n = 1 [group 2]), feeling that life is different in general (n = 1 [group 2]), being unable to enjoy going and doing things due to forgetting about other responsibilities (n = 1 [group 2]), needing to stick to familiar tasks and places (n = 1 [group 2]), thinking and talking things through a little bit more (n = 1 [group 2]), needing to be more organized and aware (n = 1 [group 2]), and needing to be more cautious (n = 1 [group 2])