Informal carers’ experience and outcomes of assistive technology use in dementia care in the community: a systematic review protocol

Dementia is becoming increasingly prevalent as the population ages and has been declared a public health priority [1]. There are an estimated 46.8 million people living with dementia globally, and the number is likely to double by 2035 [2]. Most of the care for persons with dementia living at home is provided by informal cares [3]. In the UK, there are over 700,000 informal carers for persons living with dementia [4]. Reports estimate the value of time given by informal carers to persons with dementia at approximately £12.4 billion a year for the UK [4, 5], and the global economic cost of dementia is estimated to be over US$ 604 billion [6]. In England, about 15% of dementia carers say they are not in work because of their caring responsibilities and around 39% of carers spend more than 100 h per week caring for a person with dementia [7].

Caring for an adult with dementia impacts on psychological, financial, economic and physical wellbeing of the carer [8‐12]. Without support from informal carers, any formal support system for a person with dementia is likely to collapse. Caring for a person with dementia is not a static process [13], there is currently no cure for dementia and it is progressive; the trajectory of progress is uncertain, and carers are faced with the complexity of not knowing how quickly the dementia will progress. Therefore, it is vital to support carers in their experiences of providing care. In the UK, a national strategy for carers [14‐16] is committed to supporting carers at an early stage and recognising the value of their contribution. Furthermore, the Care Act [17] sets out requirements for assessment and support centred around carers’ wellbeing. These, however, are poorly adopted. Stretched health and care resources necessitate alternative and innovative ways to providing care for persons with dementia [18]. Assistive technology has been suggested as a means to support persons with dementia and their carers to stay independent in the community [19, 20]. Assistive technology (AT) can be defined as ‘any item, piece of equipment, product or system that is used to increase, maintain or improve the functional capabilities and independence of people with cognitive, physical or communication difficulties’ [21].

AT can be specialist equipment that is prescribed by a healthcare professional or available ‘off-the shelf’. AT can be products such as clocks, medication dispensers, smartphone apps, robotic vacuum cleaners, smart gas meters, social assistive robots, communication books, navigation systems, falls and motion detectors and door exit alarms [22‐24]. Use of AT by persons with dementia may by extension also benefit the carer [18, 25], which could potentially increase support from carers and alleviate some of the burden of caregiving [23, 26‐28]. AT potentially assists carers to address the increased level of responsibility whilst caring for a person with dementia [29]. Future generations will be more familiar with technology with people having lived their entire lives influenced by it. With advances in the Internet of Things and artificial intelligence, AT is likely to become more personalised to individual needs and user requirements [30]. Home is an important and special place when ageing. Living at home brings with it a sense of security and freedom [31, 32], and persons with dementia will strive to live at home for as long as possible. With technological advances, AT would be one way of assuring this continues to happen. Carers of persons with dementia are in the unique position of using their perceptions regarding AT to suggest or even decide on the access and use of AT [33, 34].

Currently, AT is being viewed as a panacea for reducing carer burden [32, 35]; multiple studies are investigating how AT can support persons with dementia [19, 36]. Carers could be using the AT together with the person with dementia and/or be looking after a person with dementia, who uses AT independently of the carer. However, little is known about the experiences of carers using AT and what impact AT has on carer outcomes [37]. This review aims to fill the gap in the literature that so far has predominantly looked at AT from the perspective of persons with dementia and its use within institutional settings [18, 38‐40]. We seek to answer research questions regarding experiences of informal carers using various AT and their effectiveness. This information would benefit carers and persons with dementia and healthcare professionals who prescribe and set up AT solutions at home as well as industry and AT developers. The results from the review will result in a summary matrix of common types (e.g. mobile phones, alarms) and uses (e.g. communication, safety, personal care) of AT in dementia care. This matrix will be further refined in a consensus meeting with stakeholders, including carers and health professionals who usually prescribe AT.

This review will aim to:

The following information will also be reported: What was the profile of informal carers and persons with dementia in the studies? What was the range of outcome measures used to report on burden, quality of life and wellbeing in the included studies? How is the caregiver/care receiver relationship reported?

This protocol has been prepared following the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) guidelines for systematic review protocols [41]. (The PRISMA-P checklist is included as Additional file 1). The review protocol has been registered with the International Prospective Register of Systematic Reviews PROSPERO (CRD42017082268).

This review will gather evidence on the effectiveness and informal carers’ experience when using AT to support persons with dementia at home including perceived burden, quality of life and wellbeing with use of AT at home.

We anticipate certain limitations to our review. Due to the prospect that there will be a widespread range of AT, reported outcomes and outcome measures used within the studies, there will be widespread heterogeneity in the included studies. Due to financial constraints, we are not including languages other than English within this review and this could potentially miss some suitable studies. We are also not including unpublished data within this systematic review due to the potential of low quality of data from non-peer-reviewed sources.

The main aim of this review is to describe informal carers’ perception and experience of AT use in dementia care. The results of the review are expected to inform a summary matrix of common types (e.g. mobile phones, alarms) and uses (e.g. communication, safety, personal care) of AT in dementia care. The review will also identify commonly used outcome measures that assess informal carer burden and quality of life in conjunction with AT use in dementia. The inclusion of quantitative and qualitative study designs will help understand the breadth and depth of informal carers’ experience of AT use for a person with dementia. The review will highlight investigations on the impact of AT use on informal carers and commonly used outcome measures and experience questionnaires that have been used within this research area. The findings from this review will be published and disseminated (journals, conferences and social media), and it is anticipated that the findings will be useful for healthcare professionals, commissioners and AT developers to inform better provision of care in the community for carers of persons with dementia.