Table 3.

Caregiver report of symptoms bothersome to community dwelling persons with dementia, n = 150.

Symptom category	Example(s) of verbatim responses*	No. (%)† N=150
cognitive deficit‡	Forgetting how to get to the bedroom	71 (47)
Pain‡	Arthritis all over her body	46 (30)
Depression‡	Sadness and loneliness	26 (17)
activity disturbance§	Packing bags, trying to leave; Hiding things; Wandering	23 (15)
Thought and perceptual disturbance§	Extremely paranoid; Hears voices; Sees children; Thinks I’m stealing her money	12 (8)
Limited activity‡	Getting around is difficult; can’t walk	9 (6)
Anxiety‡	Heightening anxiety	9 (6)
Incontinence	Couldn’t control urine	8 (5)
Decreased appetite‡	Not eating properly	6 (4)
Dermatological	Skin irritation; Itching	6 (4)
Weakness	Leg is weak from a stroke	5 (3)
Shortness of breath‡	Having trouble breathing	4 (3)
Constipation	No bowel movements in four days	3 (2)
Upper respiratory symptoms	Coughing	3 (2)
Relationship strain	Clashing with caregiver	3 (2)
Nausea‡	Nausea	2 (1)
Ophthalmological	Cataracts	2 (1)
Swallowing difficulties§	Having problems swallowing food	2 (1)
Apathy§	Basically sits around in a chair	2 (1)
Decreased sensation of wellbeing‡	Used to being independent	1 (1)
Dizziness	Became light headed while walking	1 (1)
Hearing loss	Hearing has decreased	1 (1)
Neurological symptoms	Tremor	1 (1)
Description of medical condition	Blood pressure out of control; had a seizure	9 (6)
Not able to be classified	Complains feeling funny around the head	2 (1)
Other physical symptoms	Hot flashes	2 (1)

^*Caregiver responses to the following questions: “In the last week, what symptoms or problem has been the most bothersome for the person with dementia?” and, “Is there a second symptom or problem that has been bothersome for the person with dementia?”

^†Number of caregivers reporting each symptom, with some caregivers reporting more than one symptom

^‡Indicates symptom included in the ESAS

^§Indicates symptom considered dementia specific