Innovation: Dementia Care Support Programme

North Dakota, USA

AAI Domains:

• Independent, healthy and secure living (improving access to health care services, lifelong learning, improving mental well-being)

• Participation in society (social connectedness)

Caring for an older person living with dementia can be rewarding, but it can also pose risks to the health and well-being of caregivers. There are estimated to be more than 11 million people in the USA providing care to more than 5 million people who are currently living with dementia. With somebody developing dementia every 67 seconds, the number of people living with dementia is forecast to be over 7 million by 2025 and by 2050 it is estimated that number will nearly double to 13.8 million people.

Providing support to caregivers is one of the World Health Organisation’s European region’s five priority interventions for active and healthy ageing, so it is important to develop socially innovative approaches or risk the increasing number of older people living with dementia in need of social care having negative effects on the health and well-being of carers that leads to their exhaustion.

Providing support to caregivers can be particularly challenging in sparsely populated areas where access to services can be limited by travelling distances. North Dakota is a sparsely populated state in the north west of the USA with just over 750,000 people and has the fourth lowest population density. In common with the rest of the USA, it has an ageing population with a relatively small but growing number of people living with dementia.

In 2010, the state legislature authorised $1.2 million for the Minnesota and North Dakota Alzheimer’s Association to establish the Dementia Care Service Programme (DCSP). The DCSP employed five specialist dementia consultants to cover all of North Dakota with the support of three administrators and a data analyst. The consultants are contacted by clients, often after a medical consultation or through publicity and awareness promoted by the Alzheimer’s Association, and ideally arrange a face-to-face visit that typically lasts 60–90 minutes to assess the living and health situation of the caregiver and the person living with dementia.

The consultants provide emotional support that caregivers have found to be empowering, education on caring and managing a person living with dementia and develop a care plan with caregivers and the person living with dementia. The consultant returns and reviews the care plan arrangements, which invariably involves making links with existing community organisations, four times in the next six months and will continue to provide support when it is needed.

Funding for the DSCP was renewed in 2012 and 2014 at a similar level and an evaluation report by the Centre for Rural Health and the University of North Dakota in 2013 found positive effects. The evaluation sample consisted of 1,750 carers with an average age of 61 years, 73% of caregivers were female and were typically either the spouse or a daughter of the person living with dementia. Caregivers reported a greater sense of social support and empowerment as a result of the consultations with dementia specialists and there was a significant reduction in the use of health care services and long-term residential care that was estimated to be in the region of $40 million over the 2010–13 period.

In relation to active ageing, the DCSP provides support to those people who are giving care to older adults and thus contributes to their ability to active age well. The care plans that are developed look to build stronger social connections so that people living with dementia and their caregivers are not isolated. It is interesting to note that although North Dakota has a notable population of indigenous Americans (approximately 2% of the population) they are relatively under-represented among the clients of the DCSP.

The programme provides awareness and education on dementia for caregivers that is a form of lifelong learning. The DCSP appears to have positive effects on the health and well-being of caregivers and it is particularly impressive for the estimated savings on hospital services and long-term institutional care. Although it is only a relatively small scale project, it shows the potential impact that such an intervention can have for a rural population.

Websites

Agency for Healthcare Research and Quality

Centers for Disease Control and Prevention