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Determining the quality of life for a person living with dementia
Determining quality of life is a difficult task due to the subjectivity and individuality involved. This challenge is exacerbated as a person’s opinion of their own quality of life adapts along with cognitive diseases such as dementia,12 with changing priorities through the progression of the disease.13 For example, a person might value intellectual capacity highly during the early stages of dementia, whereas safety and comfort may take precedence as the condition progresses.
Despite the publication of many instruments designed to measure quality of life in dementia, each with differing approaches, Lawton’s model, defined in 1994, appears to have had the most influential impact on subsequent instruments.14 It argues the importance of subjective and objective factors as well as defining four overarching contributing areas to quality of life: psychological well-being, behavioural competence, objective environment and perceived quality of life.15 Researchers have interpreted Lawton’s model differently, with some considering them as predictors of quality of life, and others believing they are the defining features of quality of life.14
In 1995, the WHO defined quality of life as ‘the individual’s perception of their position in life in the context of the culture and value system in which they live, and in relationship to their goals.16 However, this definition does not consider the restricted ability of someone with declining cognitive ability to make judgements and communicate their subjective state. This gap was identified by Logsdon et al,13 who designed the Quality of Life in Alzheimer’s Disease (QoL-AD) model to enable individuals with progressive cognitive impairment to rate their own quality of life, while providing a comparison to a caregiver’s opinion. This model was originally tested on a sample size of 177 patient/caregiver dyads and offers a series of 13 factors that fit under the four domains set out by Lawton. Patients and caregivers are able to rate each of the 13 factors to determine a quality of life rating.13 This model has the benefit of being administered within 10 min and assessing the reliability against a caregiver’s score, yet lacks the ability for patients and caregivers to define their own weighting of the different factors, and thus what is most important to them.
One model that does take individual perception and weighting into consideration, influenced by Lawton’s model, is the DQoL. In contrast to QoL-AD, which is used by both people with dementia and their caregivers, DQoL is exclusively for people with dementia and allows an individual to rate factors under five domains: positive affect, negative affect, feelings of belonging, self-esteem and feelings of aesthetics.17 The term ‘affect’ refers to an individual’s subjective opinion on how emotions impact their mood both positively (eg, pleasure, interest) and negatively (eg, sadness, anger).18 The DQoL model was tested on a sample of 99 patients with mild to moderate dementia and was found to be more accessible than the QoL-AD scale, with only 4% unable to complete the screening stage, as opposed to 12.4% for the QoL-AD model.14 The increased availability, domain simplicity and aggregated importance ratings are likely to better represent the subjective factors that contribute to quality of life.
The DQoL model (table 4) has been selected for this review as a reference point for technologies discussed. Therefore, technological interventions will be compared against the five domains of DQoL deemed important to quality of life.
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The implementation and challenges of technological solutions for people with dementia
In 2017, the WHO recognised a neglect in public policy for the provision of dementia care solutions.19 One specific strategic area of the WHO global action plan5 is focused around improving care for people with dementia, with a focus on enhancing information systems for dementia and fostering innovation.19 This action plan represents a positive movement to encourage the creation and support of solutions that improve the quality of life for both patients and caregivers. In response to the global action plan, the WHO developed iSupport, an online training programme for caregivers of people with dementia.20 iSupport helps caregivers understand the impact of dementia and helps them recognise and improve the quality of care provided for both the person with dementia and themselves.
Beyond support for caregiver learning, such as iSupport, assistive technology appears to play a pivotal role in improving an individual’s quality of life. In the context of dementia, Marshall21 defined assistive technology as ‘any item, piece of equipment, product or system… that is used to increase, maintain or improve functional capabilities’. However, this definition does not consider the potential impact on some of the qualitative measures that improve quality of life, such as those defined in DQoL. Consequently, this review suggests a more suitable definition, in the context of this literature review, would be ‘A technological solution that intends to improve the quality of life for people with dementia or their caregivers, either through maintaining or improving functional capabilities, facilitating improved self-esteem or sense of belonging, or increasing the ability to gain pleasure through activities or environments’.
Gibson et al22 conducted a comprehensive study on the available assistive technology solutions for people with dementia in the UK and proposed a useful segregation of solutions. All solutions observed were able to be placed into one of three categories: ‘by’, ‘with’ or ‘on’. ‘By’ solutions are those that can be used independently by the person with dementia, and generally support the completion of everyday activities (eg, signage or alarms). ‘With’ solutions are collaborative and encourage the interaction between the caregiver and individual with dementia (eg, reminiscence aids). ‘On’ solutions are designed to intervene in a person’s life without active participation, and generally aim to lessen the risks to the person with dementia (eg, fall detectors or smoke alarms). It is, however, noted that some solutions may apply to more than one category, such as a game which can be used ‘by’ someone, but also as a tool to encourage communication ‘with’ a caregiver. Figure 2 illustrates the categories and some example subcategories that fit under assistive technology.
Categories and subcategories of assistive technology (AT) (adapted from Gibson et al [36]). GPS, Global Positioning System.
Solutions used ‘By’ people with dementia
As one of the most prevalent symptoms of dementia is forgetfulness,5 it inherently becomes more challenging for people with dementia to learn something new and unfamiliar. Therefore, it could be argued that creating solutions that are designed to be used ‘by’ someone with dementia independently, is one of the more complex problems faced in dementia-related care. Despite the challenging nature, enabling people to perform simple everyday activities is significant, as it lessens the burden on caregivers, and can help improve an individual’s self-esteem,23 noted as one of the key domains in DQoL.24 This is supported in a study25 which concluded that technology can support increased confidence and retention of independence for people with progressive neurodegenerative diseases such as dementia.
Due to the challenges of designing solutions to be used by someone with dementia, many examples are simple in design and function, with an aim of improving intuitiveness and ease of use. Solutions such as large clock faces are examples where no user interaction is required, however Gibson et al22 found the date format on many (dd/mm/yyyy) to be unsuitable for people with dementia. Other available examples have further simplified this by only displaying the day of the week, and a general time of day (ie, morning, afternoon, evening, night), such as that provided by Day Clock.26 Similarly, Gilliard and Hagen, as cited by Fleming & Sum,17 created a simple ‘Day and Night Calendar’ that was successfully adopted by 84% of participants, with caregivers stating simple and familiar formats were impactful. Other technologies for time and place orientation, such as motion sensor lighting, are also available to mitigate some of the risks associated with dementia.
One issue experienced by many people living with dementia and their caregivers is poor medicine adherence. Pill dispensers can help alleviate this problem, acting as alerts or reminders, in addition to preventing overdoses through the separation and locking of doses. Such devices are becoming increasingly sophisticated, with examples such as ‘Pivotell’27 able to alert a caregiver if a dose is missed. Fleming and Sum17 emphasised the high acceptance rate for pill dispensers in the Gilliard and Hagen study, with over 80% of participants finding them useful. Despite this, Hopkins28 found that complex designs and difficulties learning to use such devices often proved restricting. Other alert-based solutions, such as ‘Boil Alert’ to prevent cooking accidents, and ‘MagiPlug’29 to prevent overfilling baths or sinks, are available to enable people with dementia to safely live more independently.
Generally, ‘by’ solutions that require minimal interaction from users seem to promote greater acceptance. This is supported by Cook et al9 who also highlight more successful outcomes through lower interaction requirements. Familiarity is also likely to play an important part, recognisable objects and familiar voices are more likely to be accepted and are easier to use intuitively.
Solutions used ‘With’ people with dementia
In a study conducted by Gibson et al,22 it was found that the fewest available solutions fit into the ‘with’ category (enabling social interactions and communication with others). This could be attributed to healthy people often having trouble interacting with people with dementia, partly down to a lack of understanding.24 In addition, other potential symptoms of dementia, including difficulties with speech, reasoning and decision-making, could make it difficult for people with dementia to engage in meaningful interactions, often detrimental to their self-confidence and quality of life.30 Despite this, positive social interaction can have a substantial impact, with Kim et al31 stating that positive social experiences are proven to slow down symptoms of the disease. Enabling these dialogues and experiences also has the potential to positively influence feelings of worth and belonging and can help individuals with dementia to experience activities or environments that they can appreciate and enjoy with others—all of which being vital factors in the DQoL model.
One example of a ‘with’ solution is Talking Mats, a communication tool seeking to help people with communication difficulties interact by using symbols to represent feelings and emotions. This was found to improve communication with people with dementia at all stages of the disease.32 However, this study was conducted using the physical product, and although a mobile application is available, there is no literature on its effectiveness in the context of dementia.
Games and applications for the enjoyment of people with dementia are becoming more common with increased accessibility and affordability of touchscreen devices.33 Although not primarily communication-based activities, they can be used with a caregiver to promote discussions and enjoyment. Touchscreen games appear to be well received, with over 90% of participants in the Astell et al’s33 study stating they experienced enjoyment when playing a familiar card game that had been digitised. This result was slightly higher than the 85% who enjoyed playing a generic, non-familiar game on a touchscreen device. This finding was echoed by Zheng et al,34 who also identified positive impacts on an individual’s cognition and balance as a result of game-based interventions, however highlighted a current lack of evidence supporting their use.
With negative social experiences or social isolation impacting self-confidence,30 it is imperative that positive experiences are encouraged and facilitated to improve quality of life. One method of achieving this is through reminiscence, proven to improve mood, cognition and behaviour,6 while also increasing interpersonal communication.35 Reminiscence therapy is the use of familiarity to promote discussion, with objects, activities or events of individual significance being used to facilitate this. Huldtgren et al30 point to many examples of technological solutions for reminiscence, including:
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The use of photo, video and music to support one-to-one reminiscence sessions, with positive reported outcomes.
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3D modelling of environments (eg, Gardens) for people with dementia to enjoy environments they can no longer access, well received among those in mild to moderate stages of dementia.
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An old-fashioned radio, and television that played music and news from 1930 to 1980, proving popular although some participants had difficulties with a standard remote control.
Solutions used ‘On’ people with dementia
Accounting for most of available care solutions in the UK, and responsible for monitoring activity and location of individuals and giving caregivers access to people with dementia in emergencies, are ‘on’ solutions.22 These solutions typically require no interaction or knowledge from the person with dementia and are often put in place for safety reasons and to reduce the physical and emotional burdens of care.36 Solutions in this category fall into either telecare, location monitoring, or safety and security.
Telecare refers to the remote monitoring of people often in their own homes and aims to promote greater independence.22 According to Gibson and colleagues, most telecare services included alarms and sensors connected to a telephone line or internet connection to a caregiver. Other advancements, such as those in accelerometers, also allowed for devices such as fall detectors, which can be easily included due to the modularity of telecare services. The use of such services, although endorsed by the Department of Health and having shown to prolong independent living, lacks evidence to support its cost-effectiveness in the context of dementia.37
Location monitoring is perhaps one of the most controversial areas of dementia care and is often used to counteract some symptoms of dementia, such as wandering. These solutions generally use Global Positioning System (GPS) technology so that caregivers can monitor the geographic location of the person with dementia.38 Liu and colleagues discovered a high acceptance rate of GPS-based devices among caregivers, with peace of mind and greater independence being the significant benefits. However, in a study conducted by Robinson et al,11 it was found that people with dementia occasionally resent the idea due to a perceived loss of confidence in their abilities.
Devices for safety and security generally aim to monitor or restrict a specific activity that could potentially become a risk. Examples include key safes for easy access to a house in an emergency, technology to automatically disable water flows or gas supply, geofencing to mitigate the risk of wandering and telephone blockers that can divert or cancel calls not on a predefined list.22
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