A review of research relevant to digital technology in elderly care

 

Why we built ReMe

 

Our aim has always been to build a dementia app and care system that is robust in its outcomes, that is not just an app that offers playful benefits and simple outcomes. That’s not to disparage what are often today being called Digi Pharma, i.e. apps that are downloaded by the public to gain some form of support. But we’ve worked to have ReMe be the next step in the evolution of medical apps; to be of clinical relevance, to be of value across the full care journey and to be of benefit to not only the person cared for and their family, but also to the care providers themselves. And, we aspire to ReMe being what is beginning to be termed in the US, a Digi Therapeutic. That’s a digital tool that can be used by medical practitioners as a valuable care intervention’ either instead of resort to medication, or to be used, even prescribed, alongside and supportive of the use of medication.

These are grand aims and our current work being undertaken with our partners is intended to establish an evidence base for the efficacy of digital interventions such as ReMe. Your participation and use of ReMe is greatly helpful of our intent for ReMe to achieve a social impact in this manner.

Therefore, with these aims in mind, our work with ReMe is based on the work of the leaders in our field and on the research work undertaken over the years that defines those areas of person centred care that we have sought to digitally enhance, with the aim of optimising their strategies and targeted outcomes.

Here’s a little about their research and our work.

Communications

Enabling communicating with preferred others is a NICE policy, has been recently included in Jeremy Hunt, the UK Health Ministers, basic seven care principles for social care reform, and has been shown in research to be critical in ensuring wellbeing.

Keeping in touch with a care circle and reducing isolation is a key to any care at home strategy. Both in USA and UK, studies show that staying connected improves mood and that all important sense of well-being.

Research also shows that regular contact, conversation and activity has a good impact on your feelings and that this in turns helps manage dementia and other concerns.

Aligned with this is ‘Connected Care’, which has been a sought after holy grail for many years. Its premises include connecting the doctor, those cared for, support care services and even the local hospital into a unified digitally connected care system. ReMe’s seeking to include its secure storage and portability of personal data, what we call ELR data (Electronic Life-Story Records), in this connected care strategy. Comfortable and convenient connectivity to a care circle has been shown to reduce unnecessary GP and A&E visits. With increasing usage of the internet by the over 60’s and with government policy aiming to connect those that are isolated and digitally unincluded, there’s an opportunity for local care providers and care services to be able to ensure better take up of care services and to be able to monitor their outcomes.  The general aim is to put the person cared for at home at the centre of their care and to provide them with greater control and management of their care processes, to the benefit of all concerned.

Life Story

We all define ourselves as a composite of our experiences and our memories and loss of these memories through any disability has a debilitating affect on self-awareness, confidence and the ability for social interaction. Defining the person through Life Story work is not new and the Alzheimer’s’ This is Me form, a pen and paper derived definition of the person cared for’s past and present, is widely used in care facilities. 

It has been shown in research that providing a definition of a persons life, that is accessible for reference, can provide a supportive process for person with memory difficulties.

Coupled with the key stimuli of sight and sound, memories can be used to enhance a sense of self- worth and wellbeing. ReMe also provides a library for others in the care circle to participate in building by providing content known to be relevant and engaging. 

My Story provides a definition of a person’s life in both a time lined format and on the basis of the themed components of a person’s life. It has been shown that carer engagement can improve when commonality of experience and interests is discovered through the exploration of mutual life stories. ReMe therefore offers carers the means also to build their own life stories for use in communication.

ReMe’s digital Life Story creation process therefore facilitates a means to enhance person centred care delivery. At the heart of any care strategy, person centred care, can only be truly effective if knowledge of the person is at hand. The work of Tom Kitwood and more recently of Prof. Dawn Brooker highlight key strategies in the effective delivery of person centred care, and ReMe has been built on these foundations and with aim of digitally enhancing their intended outcomes.

Reminiscence

Reminiscence is something we all do regularly, whether when alone or as a social interaction. But in the care setting it bears particular significance. For the memories that we recall define the person that we believe ourselves to be and as cognitive faculties decline, those that we retain will represent the world that we inhabit. There are studies that have illustrated the positive benefits of reminiscence. These use standard cognitive function measures such as the Mini-Mental State Examination (MMSE) method, the Geriatric Depression Scale short form (GDS-SF) method to define the perception of the person cared for on their own well-being, and the Cornell Scale for Depression in Dementia (CSDD) to quantify a carers appraisal of the person cared for’s emotional condition.

There is little doubt that reminiscence work has significant benefit to carers and family, however there are numerous studies (Cochrane Dementia and Cognitive Improvement Group) that show that reminiscence has little impact on cognitive decline retardation. Whilst have measured significantly positive outcomes. The study by IRISS in 2011 puts it succinctly:

  • Reminiscence therapy and life story work are valuable psychotherapeutic approaches
  • Reminiscence therapy and life story work can improve the mood, cognitive ability and well-being of those with mild to moderate dementia
  • Research suggests that the effects of biographical interventions are weaker for people with severe dementia
  • There is evidence to support the view that life story work can improve the relationship, whether family or professional, between the person with dementia and their carer(s)
  • Reminiscence therapy and in particular life story work provide a context for the provision of person-centred care, whether in the home, nursing home or hospital context
  • Life story work can be especially valuable when the person with dementia is transferred from a home to an institutional setting, or between institutions

However, it should be noted that the studies conducted did not use digital technology in the manner deployed by ReMe, to seek to optimise reminiscence delivery or the capturing of outcomes. It is our view and indeed our experience that technology has the power to so significantly improve the process of reminiscence provision, to utilise the outcomes from such sessions to replicate previous sessions, to discover content during a session and to explore the discoveries made during a session at the time of discovery and return to it at a later date to continue the engagement, that this brings a new dimension and potential to the value of reminiscence. For example, the potential for changing direction in a reminiscence session, such that the content presented is no longer fixed and pre-defined but adaptable to the response of the individual, provides the opportunity for a different quality of outcome. We intend to undertake work to evaluate these digital interventions when the opportunity presents itself.

Music therapy

We’ve all experienced the remarkable phenomena of being able to recall the lyrics to songs heard when we were young. Indeed, often even those of songs that were not even particularly important to us. Music and its pattern structure appears to facilitate easy memory retention and seems to be more easily recalled than various other memorised data.

Music therapy has long been used in dementia and cognitive impairment care and is increasingly used in many other care sectors, such as brain injury and stroke. There is little need to debate music importance in the care process (see DementiaUK), but some of the strategies deployed are worthy of definition, since ReMe’s music section functionality has been based on enabling them to be more easily deployed so as to achieve a greater effect and outcome.

One therapy particularly used by ReMe is Music Conversations, in which a conversation with a person cared for can be enhanced by playing the music discussed and by capturing any stories that accompany the conversation. Future returns to the captured conversation can have musical or story content added to it, so that the experience is amplified and the potential for repeated recall enhanced.

And a key to the efficacy of music therapy is family knowledge of the music that engages the person cared for. We all know our families favourite songs and ReMe makes it easy to find them, host them, build them into playlists and enable them to be easily used by carers. And to add text and image stories alongside them to complete the potential for an audio memory journey. This digital process greatly enhances the potential for positive outcomes during therapy.

One of the powers of music and a strength of the ReMe system, is its ability to socially engage groups through their common love of a particular genre or a specific piece of music. ReMe can find and record these common interests and then deliver created playlists of popular music. So, a day care centre or a memory clinic can easily be made aware of a person’s preferences and plan for highly bespoke music engagement, and so in a group setting this can aim to achieve social engagement.

The outcomes of ReMe’s music therapy are made available to families via the ReMe care circle auto session update, who then can further enhance the knowledge discovered, if they so wish.

The research on the efficacy of music therapy is extensive but our personal experiences are often the best validation for the power of music.

Games

Most people love games, of one type or another. Whether it bingo or quizzes, jigsaw puzzles or Sudoku, depending on capacity, there will be times when a game is just what is wanted. ReMe offers a variety of digital games (and we will add more all the time and those intended specifically for our user types). These can be played on the TV or on a tablet. Whilst some are simply quizzes and collections of images and visual questions, such as music, art, famous people, places and events, as well as known and traditional games, such as jigsaws, however others are specifically modelled on the underlying principles of work undertaken in the field of cognitive stimulation therapy (CST).
These CST based games provide a means to assess cognitive engagement, to monitor through repetition visible decline, to record outcomes and to seek to reinforce recall through familiarity. However, that said, the primary purpose is to entertain both the person cared for and the carer and like every activity in ReMe, to be simply a catalyst for engagement, communication and ultimately for having a bit of fun. We’ve built them with this very much in mind. ReMe’s games and quizzes can be used in a group or one to one setting and whilst they are simple to deliver, we recommend that there will be benefit to be had by referring to the manuals created by those that have developed some of the underlying principles that we have sought to integrate into the games that we have built. (See Cognitive Stimulation Therapy at UCL ) And ReMe provides a means for you to build your own games, perhaps based around family photos or music and to create a question and answer-based session, that can be fun for all the family. ‘Which aunt is that? Doris or Jane? ‘Do you remember that holiday? Spain or France?’. Every question will have a story attached to it and these can be recorded so that the game becomes ever more replete with stories to jog the memory and entertain those present.

Physical Exercise & Diet

ReMe offers in chair activities, meditation, yoga and stretching exercises. This can be presented easily on a TV. And ReMe’s calendar system can prompt for regular usage. The positive impact on both physical and mental wellbeing is well publicised and so of more importance to define here, is the simplicity of delivery and ease of access, intended to promote regular usage.

Research is increasingly telling us that a good diet is as essential for older people and people with dementia as it is for everyone else. It tells us that we all need essentials for good brain activity, physical and mental well-being as well as combating minor problems like colds and stomach upsets.

You can use ReMe to record your exercises and diet; you can get reminders to get started and even stop when you reach your target and you can even ‘remind the chef of your dietary preferences’. ReMe is not a system for assessing dietary needs or for managing a diet. But it does provide a means for remote notifications and reminders to ensure hydration and food intake. And My Story’s My Day is a place for a family to make short videos showing how recipes can be made and to stimulate healthy nourishment.

Self-care management

ReMe currently is most suited for use by carers and those they care for as a couple. However, ReMe does provide a number of self management tools. These will be added to over time. Work has been undertaken to study the best practices to adopt to assist those caring for themselves in the community (See Prof Clare) to adopt to develop patterns of self-care management that can assist maintain a quality of life that will better support well-being.

And ReMe provides a resource for recording the tools that can assist present in video form some of the essential daily activities. 

Health passport

ReMe is not care planning software and does not hold clinical data. But the personal data that it does hold, that we call ELR (electronic LIfe Records), is held in ReMe’s My Health Passport, and securely in ReMeVault. 

This is data relating to preferences for food and drinks, daily routines, pain and well-being and that defines the six things about a person (My Six) that define them and that a clinician can use quickly to get to know you. 

This knowledge can be vital at admission to induce calm, to prevent premature resort to medication to calm agitation and simply to engender reassurance through the nurses knowledge of the person. And the data held relating to preferences, Life Story and preferred activities can engender a sense of familiarity that can improve person centred care delivery, improve wellbeing and ultimately enable an earlier discharge and more effective step down process. All data within the Health Passport is only made available with the content of the family or the person but can provide a valuable resource for the provision of family knowledge on such as allergies and dislikes.

Our work with Kingston Hospital to establish the efficacy of ReMe on numerous data patients across the patient pathway will be available later in 2018.

ReMeVault

Your personal information may not be used without your permission. ReMe stores your information and data securely in the ReMeVault. We are committed to keeping it safe and undertake to keep it secure from prying eyes – we will not share, sell or use your information unless you give us clear permission to do so for a specific purpose that you have defined.

In these times of increasing uncertainty about the sanctity and personal control of our data, ReMe provides a built in means to ensure that the data about the person cared for remains either in their or in the family administrators control. And that only those care providers that have the authority to do so, can access this personal information. And that they will not have the means to use it in any exploitative manner.

ReMeVault makes your data secure. And it also makes it portable. ReMe is registered with the Information Commissioner’s Office and has been validated by the UK NHS’s G Cloud compliance process  –  there are strong penalties for not complying with UK law. 

Most nations have legislation that controls who (if anyone) may see or use your personal information and ReMe has been built on the basis that this information is personal, and no one is allowed to see it unless they have provided permission to use their data. The Court of Protection has special rules protecting people unable to make their own decisions. The General Data Protection Regulation 2018 under which ReMe is bound provides further reassurance of the security of the data held in ReMe.

Digi Pharma & Therapeutics

We’re seeing significant changes in the perception of the power of digital interventions and so its worth providing an overview of the emerging school of thought regarding the growing trends and terminology in the field.

Digital Therapeutics is a different class of product than Digiceuticals. It’s easy to get them confused. The difference is similar to prescription medication versus nutritional supplements. Both play their role, but the standards of efficacy, and thus pricing and reimbursement are very different.

Digital Therapeutics can be defined as ‘a new field of medicine consisting of immersive programs that act reliably and remotely to change individual’s behaviors in order to achieve positive clinical outcomes and reduce medical cost growth. They are used often in conjunction with medication but may act as a replacement for conventional prescribing, post achieving the usual approvals.

Digi Pharma/Digiceuticals are a consumer-focused business, comparable to for example, nutritional supplements. Consumers pay for them directly after discovery via a traditional marketing approach. They are typically not reimbursed, not FDA/NHS authorised and are low priced.

So where does ReMe fit in? Well, it’s probably not for us to say, since an evidence base is the norm for making any claims re achieving a positive medical outcome (we’er working on that). But ReMe can achieve improved wellbeing, shows an propensity to be able to support cognitive retention and recall and can be used in therapy and acute care strategies. So in terms of definition alone, ReMe would seem to fall into both categories, depending on the methods of deployment used. But time will tell where adoption best takes place.

The evolution of digital healthcare interventions will be an interesting space to watch over the  coming years. In the meantime, ReMe will continue to bring digitally enhanced person centred care to people and care businesses everywhere.

Voice integration in Care

Nurses and home carers in the assisted living and care home units trials of the combination of ReMe and Alexa show them to be responsive to voice interaction and positive to the engagement process and the potential for increasing responsiveness to medication and hydration alerts has proved positive in trials in both the UK and the US.

ReMe enables Alexa to better know the person, and therefore for the person to build a deeper, more loyal relationship with the technology. 

With it being possible to fulfil such basic requirements keeping contact with the family, care support, checks on calendar scheduled activities and activating entertainment, ReMe and Alexa soon become a key part of the day’s activity process. ‘Voice is simply easier to use and more natural a way to communicate and so is the ideal interaction for care support’.

The potential for hospitals to use voice to motivate medication regime adherence post step-down, to be more confident of available access to support post-surgery and step-down, and to gain the data required to evaluate responsiveness both to medication and service provision, is substantial. Companies in the UK such as Cambridge Cognition, are exploring the potential of voice to achieve cognitive assessments and to monitor medication outcomes, whilst ReMe will continue to develop enhanced voice activated person centred care and activity based skills.

Voice in care is in the early stages but has a clear role to play in the evolution of the role of tech in care at home. ReMe will continue to be at the forefront of development and integration (see our recent hosted conference on Voice in the UK here).