Needs of Community Dwelling Patients With Dementia and Their Caregivers
| Categories of Need | Description | No. of Studies |
|---|---|---|
| Needs of the patient/caregiver dyad | ||
| Early diagnosis52–54,56,64–66,73,80,85,87–89 | Need for early diagnosis (to understand the behavioral problems and gain timely access to resources). | 13 |
| Education/counseling54–52,59–68,72–75,79,80,82,85–89,92–97 | Need for specific information on medical and interpersonal aspects of the disease, meaningful counseling on dealing with behavioral problems, guidelines on dementia before and after diagnosis. | 32 |
| Information about relevant services65,74,75,82,83,85,89,92,94,96,98 | Need for an overview of available formal care services such as community psychiatric services, domestic help, caregivers’ support groups, and insurance. | 11 |
| Legal assistance66,85,93,97 | Need for assistance with legal documents and advice on guardianship, power of attorney, etc. | 4 |
| Financial support/planning53,55,57,59,66,88,89,92,93,96,97 | Need for assistance with access to financial programs that can help if the caregiver quits a job to take care of the patient and help deal with household and medication expenses. | 11 |
| Advance care planning85 | Need for information on future care problems. | 1 |
| Care coordination/continuity of care/well-defined care pathway52–54,64,65,67,68,73,86,98 | Need for continuity between the various health care services involved, access to services corresponding to the severity of the disease, support throughout the course of the disease from the same health care professionals, and coordination of medical and community services to optimize services and prevent overlap. | 10 |
| Access to family physicians trained in geriatrics52–54,66,86,88,92 | Need for access to a family physician who has adequate knowledge of the disease, is sensitive to the concerns of patient and caregiver, can provide guidance on demen tia, and can follow patients with dementia and their caregivers. | 7 |
| Access to other health care professionals trained in geriatrics65,70,73,81,86–88 | Need for access to health care professionals who know the disease, respond competently at disclosure of the diagnosis, and communicate test results clearly. | 7 |
| Needs of the patient | ||
| Meaningful activities60,74,77–79,84,85,90,95 | Need to take part in activities, join in with others, do things, and have company. | 9 |
| Assistance with ADL/IADL57,68,74,76,79,84,85,87,88,91,97 | Need for help with ADL (commonly for bathing/dental care, dressing, and walking) and with IADL (commonly for housekeeping, meal preparation, and transportation). | 11 |
| Behavior management63,75,84,87,88,90,91,95,97 | Need for pharmacologic and nonpharmacologic approaches to managing the behavioral spectrum of the disease, especially agitation and restlessness, verbal aggression, and anxiety. | 9 |
| Cognition management79,84,87,88,90 | Need for pharmacologic and nonpharmacologic approaches to managing the cognitive spectrum of the disease. | 5 |
| Management of mood swings/depression77–79,84,90,93,97 | Need for pharmacologic and nonpharmacologic approaches to managing depression. | 7 |
| Safety69,74,77,78,84,85,91,97 | Need for help in managing fall and wander risk, ensuring home safety, and minimizing the risk of accidental self-harm. | 8 |
| Needs of the caregiver | ||
| Emotional support53,57,59,62–64,74,80,95,97 | Need for assistance with feelings of being alone, abandoned, helpless, exhausted, and mentally burdened. | 10 |
| Social support53,56,58,59,62,67,75,81,87,88,91,97 | Needs to have social outlets such as time alone, social interaction with friends, opportunities to shop and to go out. | 12 |
| In-home support55,58,66,75,83,95 | Need for help with house chores (eg, cleaning). | 6 |
| Capacity to provide care62,63,80,87,89,90,96,97 | Need for training in communication skills and in strategies for handling maladaptive behaviors and. | 8 |
| Involvement in care planning65 | Need to be included as an equal partner in formal and informal care planning. | 1 |
ADL = activities of daily living; IADL = instrumental activities of daily living.
Note: Needs for help with urinary incontinence,66,84 help with sight and hearing problems,77,78,97 and culturally sensitive services61 are not presented in the table, since only a few studies evaluated these needs.