Survey – perceptions

Respondents articulated their own perceptions of the problems (other) caregivers face.

Patient ability/ attitude related

Hygiene and personal care – 1
Difficult to understand the patient – 1
Patient behaviour & attitude – 2
Patient care (Feeding, medication) – 2

Caregiver Support related

Break / respite – 8
Break/holiday logistics with a severely disabled companion – 1
Support groups & sharing – 3
Too little information – 2
Caregiver also aging – 1
No time for self/not looking after self – 4
One person bears the burden – 2
Alone, isolated & lonely caregiver – 4
Decision making problems and fears (and family disagreements) – 3
Feeling burdened – 2

Caregiver’s Work & Finances

Expenses too heavy – 3
Loss of earning – 1

Home care related

Frustration with hiring attendants – 5

Medical professional related

Diagnosis errors & confusion – 1
Doctor’s home visits – 2
Mobile medical care – 2
Ambulance service – 2
Lack of help – 2

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