Table 2 Information needs themes of caregivers and dementia patients (n = 20 articles)
Theme | Information need | Number and percentage of studiesa | References for information need |
|---|---|---|---|
Disease-specific information | General information on dementia | 10 (62.5%) | |
Dementia Treatment | 7 (43.7%) | ||
Identifying and understanding dementia eg. typical symptoms of dementia/behaviour | 6 (37.5%) | ||
Dementia prognosis | 6 (37.5%) | ||
Current dementia medication | 5 (31.2%) | ||
Experimental drugs/Clinical trials | 4 (25%) | ||
Current research on dementia | 3 (18.7%) | ||
Genetic aspects of the disease | 2 (12.5%) | ||
Negative impact of dementia on family and community | 1 (0.06%) | [7] | |
Information specific to different stages of dementia | 1 (0.06%) | [43] | |
Chance of recovery | 1 (0.06%) | [7] | |
Memory Skills | 1 (0.06%) | [35] | |
Patient Care Provision information | How to care for the patient eg. general care, patient hygiene, food and nutritional information, best attitudes to adopt in caring | 7 (53.8%) | |
How to deal with patient’s behaviour | 6 (46.1%) | ||
Safety issues eg. how to improve safety of environment, how to keep patient safe, how to recognise fall risks and poor mobility | 5 (38.4%) | ||
Coping with hallucinations | 2 (15.3%) | ||
Communication difficulties and how to manage them | 2 (15.3%) | ||
Patient activities | 2 (15.3%) | ||
First aid and medical information | 2 (15.3%) | ||
Emergency situations | 2 (15.3%) | ||
Conflict resolution | 1 (0.07%) | [40] | |
Patient Ethics | 1 (0.07%) | [40] | |
Helpful experiences of other caregivers | 1 (0.07%) | [35] | |
How to deal with family and friends | 1 (0.07%) | [46] | |
How to advocate for patient | 1 (0.07%) | [29] | |
When to transfer patient to hospital | 1 (0.07%) | [7] | |
Healthcare Service-related | Where and how to use services/help available e.g. geriatric hospitals, nursing homes, support groups, physicians skilled in diagnosis and treatment | 14 (93.3%) | |
Financial help and services | 5 (33.3%) | ||
Legal issues | 4 (26.6%) | ||
How to apply for care programs eg. day care, long term care | 2 (13.3%) | ||
Insurance | 2 (13.3%) | ||
Home Help | 1 (0.07%) | [33] | |
Transportation options | 1 (0.07%) | [29] | |
Caregiver self-care | Stress Management | 2 (50%) | |
Carer’s entitlements (pension) | 1 (25%) | [36] | |
Managing emotions | 1 (25%) | [31] | |
General caregiver self-care eg. exercise, diet, own medications | 1 (25%) | [38] |