There exist relatively few studies in which persons with dementia were surveyed and allowed to describe their own specific unmet needs. Aside from physical problems (such as loss of eyesight and hearing and incontinence) the most frequently identified unmet needs are in the areas of information (on condition, treatment, care and support possibilities, appointments with care services etc), memory problems, and communication and psychological distress with (anxiety). A report examining quality of life issues of dementia sufferers has recently identified seven key domains: physical and mental health, social contact with family and friends, being useful to others, enjoyment of activities, self-esteem (being respected by others), and self-determination and freedom.

A different personal perspective and lack of insight into their predicament causes patients to report fewer needs, and in some cases different needs, than their carers. In one study the needs identified by the informal carers were associated with their own mental health suggesting that the greater need of the carers could also be related with the mental health problems of the carers themselves. Unmet needs mentioned both by patients and carers include:

• memory problems of the person with dementia
• communication
• (enough) meaningful activities during day time
• feelings of safety, and
• information (on the disease, prognosis, care policy, possible care and support services, appointments).