The needs of older people with dementia living at home

Background: In the UK about 141,460 people with dementia (PWD) living at home live alone. They have high number of unmet needs (UN) and are at high risk of social isolation. In order to provide person-centred care, needs of PWD must be studied considering their own views. Finally, in order to improve well being it is important to know which factors are associated with UN. Main aim: To identify predictors of UN for PWD living at home. Hypotheses: PWD living alone will have more UN than those living with others, and PWD with a private restricted network will have more UN than those with other networks. PWD will report fewer UN than their carers and researchers. Method: 152 PWD were interviewed about their needs, cognitive status, and quality of life (QoL); and 128 informal carers were interviewed about the PWD’s needs, QoL, social networks, behavioural and psychological symptoms (BPSD), functional status, and services used. Carers were also interviewed about their own symptoms of depression, anxiety, burden, and satisfaction. Non-parametric analyses, multiple regression and path analysis were undertaken. Results: PWD living alone had more UN than those living with others particularly for psychological and social needs. PWD themselves reported fewer UN compared to their carers and researchers. Higher BPSD, low-community involvement social networks, having a younger carer and higher carer anxiety were found to be predictors of higher UN. A model of the relationship among the variables was proposed. Conclusion: The management of PWD living at home should consider: an interdisciplinary and coordinated system which includes environmental, physical, social and psychological areas; targeting people living alone as a vulnerable group; the participation of PWD in their own care management; and interventions aiming to reduce UN including the treatment of BPSD and the involvement of PWD in the community. By doing this, PWD’s quality of life will be ultimately improved