My name is Keith Oliver, and I was a primary school head teacher until diagnosed with Alzheimer’s Disease in 2010.
In my role within the 3 Nations Dementia Working Group, I was delighted to meet Caroline Bartle, and through Caroline to have the opportunity to support on line workshops providing dementia training. Amongst topics covered in these workshops are dementia and the environment, mental health and dementia and what life is like to live with dementia.
I always prepare and write my pieces bespoke specifically for 3 Spirit and sit in on introductions to enable delegates to meet me and for me to tweak my input to meet their needs. It is 100% apparent of the need to give delegates insight into the lived experience which I always do honestly and truthfully.
Dementia was the biggest issue facing our society and social care system prior to the pandemic and the past 18 months have made this even more so. The work 3 Spirit does with the help of folks like me is helping to address this. I have co-presented with Caroline and two of her colleagues, and all the team are great to work with they support and encourage me and it is evident they do this for delegates too. Sometimes delegates have limited technical experience of on line events and the patience of the 3 Spirit team is admirable in supporting them. Content of the courses is excellent and pitched at just the right level with differentiation incorporated in both planning and delivery.
Support from the admin team is always excellent and settling of invoices is prompt and efficient which makes life easier for me and my problems I have with Alzheimer’s. I really enjoy working with the 3 Spirit team and look forward, my health permitting to many more future collaborative ventures.
Many individuals do not receive the post diagnostic support that is needed. Finding affordable and sustainable post diagnostic support has been a challenge in the UK and waiting lists have been impacted negatively since COVID-19. Lack of funding and problems with integrated services are some of the many barriers to good post diagnostic support.
The research shows clearly that good quality post diagnostic support is required to provide people with the information, resources and support that they need to live as well as possible with their dementia.
So, what does good quality post diagnostic support look like?
As a basis, this should include how to manage symptoms but should also include how to maximise on strengths and abilities.
It should also include how to manage and maintain cognitive skills. This might include offering Cognitive Stimulation Therapy (CST).
It should also include how to keep connected with existing networks, people who are important but should also include information on new support networks. This might include peer networks where a person can share insights, experiences and strategies with others going through similar situations.
It should also include things like practical support, specifically where a person has care and support needs.
It should also include how to plan for the future, including making legal provisions.
Our ‘Still My Life’ framework attached is a great outline of the things a person can do following a diagnosis. We co-created this in collaboration with people living with dementia.
Whilst attending a Dementia Partnership Board Meeting (our first in this area) to review their priorities, prevention was discussed. A member raised the point we should determine what we mean by prevention and suggested in some areas the evidence base was weak. The board had a range of stakeholders, and was inclusive and committed to developing meaningful changes. However, within this local authority, like many others, there had been funding cuts to the person responsible for ‘prevention’. Reducing funding for risk reduction may save funding in the short term, but has long-term implications; possibly higher costs to both health and social care. So, whose responsibility is it to mitigate risk reduction in dementia. The individual, public services or is it everybody?
Three years ago, we developed our first resource: Dementia and Risk Reduction – see below.
It was developed from an excellent document produced by WHO in 2014, highlighting the international priority of risk management in dementia. Since then, our organisation has addressed these priorities through our work streams: training and consultancy and in the development of resources
During this time, we have debated whether to utilize the term ‘risk reduction’ or ‘prevention’ in the messages we give, as these words are sometimes used interchangeably despite having different meanings.
Since we have been highlighting modifiable risk factors on our programmes, our role appears to have evolved from simply being educators in social care to activists in health promotion. Sharing with our participants information for them to share with their clients, and which they may choose to act upon within their own lives.
In July 2017, The Lancet published a long-awaited paper on the ‘Dementia Prevention and Care’ by Gill Livingtone and colleagues (http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(17)31363-6.pdf): A comprehensive review of the current evidence on modifiable risk factors in dementia care. For anyone working in dementia care this document will prove to be valuable; It is not a paper that you can skim read, it is succinct and relevant in many domains.
Risk reduction, for dementia, may be considered on three levels:
Level 1 (primary): Interventions targeted before symptoms present
Level 2 (secondary): Interventions targeted at individuals who develop Mild Cognitive Impairment (MCI)
Level 3 (tertiary): Interventions targeted at individuals living with dementia and their carers. These interventions aim to slow the progression of the disease and potentially alleviate some of the burden, enabling people to maximize strengths.
Level 3 is where most of our work is targeted. We educate front line care staff on strategies supporting people to maximize their potential, which includes enabling people to stay in control. When supporting individuals, this could be making changes to the social and physical environment and considering the relationship between health and social care factors. This area of work may not be viewed as risk reduction in the traditional sense, but it plays a fundamental role.
Level 3
In the publication, many interventions are sighted ‘care’. However, these interventions may be considered as ‘risk reduction’, carrying the same level of priority as level 1 and 2. Within Level 3, we can consider risk reduction more broadly in terms of reducing the risk of increased levels of care, hospital admission or admission to care homes; all of which have a significant impact on the individual and society, including a financial impact.
A number of ‘evidenced based’ interventions were sighted in the recent paper including (but not limited to):
Timely diagnosis
Cognitive stimulation therapy
Cognitive training
Cognitive rehabilitation
Environment adaptations
Assistive Technologies
Communication, engagement and person-centred care
Medication (moderate effect)
Carer support, education, and CBT
Sensory stimulation
Optimal end of life care
High intensity exercise
Safeguarding
Optimising hearing and sight loss
We develop resources for many of these interventions and raise awareness of them within our day to day training.
However, we must be careful about framing dementia only as a condition to be ‘managed’ as it is both stigmatising and limiting; it reduces opportunities for self-management and self-determination. Rather, a ‘management’ narrative is perhaps necessary to assist systematic support to ‘managing’ the complexity of dementia. However, we need to be aware of different perspectives: dementia is multi-dimensional.
Perhaps as part of the risk reduction agenda for level 3, we need to consider:
What does dementia bring to individuals and communities? How can we reframe ‘loss’ as an opportunity? What can we learn about the positive power of vulnerability? Do diminishing cognitive skills lead to not being ruled by reason, but instead the heart, and if so what benefits might that bring? What does living in the moment, having insights and opportunity bring?
What personal resources are available to individuals to challenge the standard paradigm in dementia? Some of the negative connotations associated with dementia stifle opportunities. If we had a more inclusive society, how could this facilitate opportunities in individuals to develop personal resources, resilience, and capacities?
What, then, is the role of local authorities in using this evidence effectively in their work?
Level 1
Incorporate risk reduction strategies into the work with services that support people over a life time, such as learning disabilities (who have an increased risk of development of dementia). This includes risk screening people in their care and ensuring that training incorporates risk reduction
Where children are in the LA care a strategy should be in place to stimulate a life time love of learning (to build cognitive reserve).
Work with allied health services to support health checks for diabetes screening, weight management and hearing checks.
Consider specific modifiable risk factors (vascular) to BAME communities with targeted interventions.
Ensure that accessible information is available to the general population on risk factors and prevention strategies. Provide information accessible information to BAME communities
Make funding available to tackle social isolation in dementia and develop ways of measuring how effective this has been. Enforce NICE guidelines for Home Care, that relate to measuring outcomes, however, consider tackling loneliness as part of this.
Develop more integrated models of work. Work which is under way – however, skills development running to catch up.
Level 2
Work to embed risk reduction strategies in core training. Many individuals working in care and support services are already working with individuals that have MCI. L&D commissioners should ensure this is incorporated into their training programmes.
Ensure appropriate opportunities are available to people with MCI for engagement and to enhance cognitive skills through day centres, luncheon clubs, and community activities
Develop effective integrated working between health and social care providers to identify and address health factors in a timely fashion
Consider multi-model interventions which enable effective, integrated working between health and social care
Level 3
Consider inclusion and self-determination as risk reduction enablers
Offer comprehensive training opportunities to services to maximize on ‘evidenced based’ interventions. We are very fortunate in Hertfordshire as our local authority has long invested in this. We have developed over 17 different educational programmes which have targeted the list of evidence based interventions, together with tackling broader social psychological factors. Over the years we have trained over 13,000 people to think more broadly and to BE proactive in their work.
Develop their services to better support informal carers, recognizing the benefit and value of this in both economic and moral terms.
For commissioners consider the services you do business with. Ask whether the services you currently work with properly understand their role within risk reduction? How many have inclusive models of work? Put funding behind front line voluntary sector services and build the social enterprise model so we can work at a primary level in our communities
Develop co-production, tapping into the talents and assets of individuals living with dementia. As a very smart chap (Chris Mason) living with dementia said recently ‘If we get things right for those living with dementia in the community we get things right for everyone’.
Develop appropriate courses, and measure the impact training has in reducing unnecessary admissions to both hospital and care homes. Some residents only require short term treatment in hospital: for example, antibiotics, fluids, or x rays, but then may become ‘stuck’ in hospital leading to increased risk of hospital acquired infections and falls.
In our work, we have been commissioned to work on a Vanguard project that successfully reduced admissions to A&E from care homes. The programme included training aimed at supporting practitioners to detect the early signs of delirium -perhaps from a chest or urinary infection – and consider risk factors which may lead to falls, such as visual perceptual challenges and the physical environment. The programme also explored how positive psychology may impact on wellbeing.
In summary, we will leave you with this thought from the Dementia, Prevention and Care Paper:
Dementia, especially Alzheimer’s, is a clinically silent disorder starting in mid-life, whose terminal phase is characterized by dementia
3 Spirit UK accredited for creating genuine social impact
Hertfordshire based 3 Spirit UK has been awarded the Social Enterprise Mark, which proves they are in business to benefit society, community and the environment.
The Social Enterprise Mark is only internationally available social enterprise accreditation, enabling credible social enterprises to prove that they are making a difference. Only organisations which can prove they operate as a social enterprise, with the central aim of using income and profits to maximise their positive social and/or environmental impact taking precedent over a requirement to maximise personal profits for owners and shareholders are awarded a licence to display the Social Enterprise Mark.
Applicants must meet robust qualification criteria in order to be awarded the Social Enterprise Mark, and are re-assessed each year to ensure they continue to meet the criteria. Subjected to an assessment process which is overseen by an independent Certification Panel, 3 Spirit UK’s governance documents and accounts were scrutinised. As a result, 3 Spirit UK has earned the Social Enterprise Mark guarantee that profits [or surpluses] are used to
to improve the quality of care for vulnerable people through education;
to support the rights of vulnerable groups through access to education;
to prevent and delay further deterioration in the health and wellbeing of a person living with dementia through access to education and/or tools.
3 Spirit UK joins other social enterprises that have been awarded the Social Enterprise Mark, such as the Age UK Enterprises, Eden Project, Big Issue, and the Phone Coop.
Government data estimates that there are 70,000 social enterprises across the UK, contributing over £24 billion to the economy and employing around 1 million people.
Social enterprises plough the majority of their profits back into activities that benefit people and planet, rather than just lining shareholders pockets. However, some businesses are taking advantage as there is no legal definition for them. The Social Enterprise Mark CIC is the guardian of genuine social enterprise principles, and it safeguards these through the independent accreditation process.
The 3 Spirit UK aim is to foster a collective responsibility in the social care sector to champion human rights, and to improve the wellbeing of the most vulnerable in our communities. Through education and collaboration, they aim to empower both front line services, and corporate strategists to maintain an ethical and moral ideology in every facet of their work. This is achieved in two different strands of their work:
by providing education to the health and social care workforce, and directly to vulnerable groups.
by providing services tools and/or consultancy to improve the impact of their work, to create efficiencies that improve wellbeing.
Over the last four years 3 Spirit UK has been dedicated to researching and developing innovative learning opportunities. This has involved engaging with a wide variety of stakeholders by utilising social media and other platforms to share ideas. In this process the aim has been to develop resources that engage the workforce, and work well in overstretched and underfunded services. In a very challenging social care market 3 Spirit UK has aimed to identify strategies and resources to help services balance competing priorities, focusing on what good care and support, and to determine how to meet individual outcomes for wellbeing.
Caroline Bartle said, “We’re really proud to have been awarded the Social Enterprise Mark. 3 Spirit UK is absolutely committed to supporting sustainable businesses and consequently helping local communities to thrive and prosper”. “Over the last two years 3 Spirit has been engaging with research that identifies factors that impact on the wellbeing of individuals living with dementia. This research shows that there are several lifestyle factors which may delay the onset and progression of dementia. A broader amount of research indicates that many people living with dementia in our communities are amongst the most loneliness, which is harmful to health. To improve outcomes, we have been reviewing the evidence base, and attempting to come up with a tool that provides solutions in practice; the Home Spirit Tool. We are hoping that the mark will demonstrate our commitment to meeting wider social goals through the application of this tool”
Lucy Findlay, Managing Director, Social Enterprise Mark CIC, advised:
“As the only way to independently assess and accredit genuine social enterprises, the Social Enterprise Mark guarantees businesses use profits for purpose not for the pockets of shareholders.”
Over the last few years, we have had the opportunity to work in a more integrated way with health services in our course development. Supported by health and social care practitioners we have been considering how health and social care interact; the cause and effect, the impact and outcomes on a practice level within specific domains. This interlocking enables us to develop new insights and tools. Within this we have been considering:
What are the individual and collective benefits to services of receiving more support for exercise for people living in with dementia?
What are the potential barriers to providing exercise in care homes and/or community settings?
What priority is given to this and what training is available to facilitate this?
Health and Wellbeing is identified in the Dementia Care Skills Education and Training Framework (section 6), as a key area for education and development for staff working with people with dementia both at tier one and tier two. Section 6 includes health as well as psychosocial activities as expected, and exercise is explicitly mentioned in the first outcome. We have interpreted the outcomes to a more meaningful and measurable course outcome, with exercise linking to many other aspects identified within this section, including but not limited to falls and pain management. Alongside my health colleagues we have debated and developed the merits and outcomes of this course which is set to be a very practical and holistic look at front line integrated interventions.
The Context
Over the last few years there has been some exciting research emerging about the impact of exercise on dementia. Alongside which we have started to see exercise offered in front line services as part of prevention strategies. In addition, policy and legislation changes such as the Care Act 2014 have outlined their vision for prevention, of which exercise must feature. Organisations like Age UK have offered chair based exercise, and exercise has been targeted by some authorities as an intervention to reduce the risk of falls and other health outcomes.
The emergence of more collaborative working between health and social care has stimulated the growth of such initiatives; pooling funding to improve health outcomes with prevention. However, what is emerging from the research is that exercise potentially has much wider benefits than reducing the risk of falls, particularly in terms of its application to dementia. Mental health services and local primary care services have offered exercise on prescription for many years as a valid form of treatment for depression, so exercise may potentially offer a valid treatment for some of the neuropsychiatric disorders which often are associated to dementia for example; depression, apathy, hyperactivity and agitation. Exercise may also enable improvements in cognition, and some research seems to suggest that exercise may act directly on the pathology of dementia. What is very clear however is that exercise has far reaching impacts both for physical and mental wellbeing.
Some Definitions
Exercise is planned, structured and repetitive movement which aims to improve or maintain physical health. Physical activity is any movement which contracts skeletal muscles and increases energy expenditure. The main types of exercise are aerobic, strength, flexibility and balance. Aerobic exercise increases breathing and heart rate. Strength exercises make your muscles stronger. Balance exercises can help prevent falls and flexibility exercises help you to remain limber and improve the range of movement.
The Barriers
However, accessing and maintaining activity where comorbidity is present can be a challenge. If a person is older when they develop dementia they may also experience barriers to accessing and maintaining exercise. For example, pain, fear of falling, arthritis, sensory loss, or respiratory problems. A person may also have restricted movement and some rigidity and quite possibly not be mobile. Good assessment, including pain assessment should be completed to develop a plan that is appropriate to that individual alongside advice from the GP. However not all people developing dementia are older, so this could exercise may be an excellent targeted intervention for younger people with dementia? A study in the Netherlands is currently researching the impacts of exercise in early on set dementia (EXERCISE-ON study) the authors (Hooghiemstra et al 2012) suggest that certain dementia characteristics such as apathy may lead to sedentary and socially impoverished lifestyles, and by targeting these interventions in a timely fashion they can have far reaching impacts.
Together with co-morbidity barriers, we need to consider the challenges dementia brings in potentially engaging in exercise. For example, difficulties with coordination, motor skills, visual perceptual challenge and memory difficulties. These difficulties will require us to have a considered approach to the support systems needed to overcome these challenges.
There is such a wide variety of exercise available to us therefore it is about identifying strengths, and identifying suitable exercises that engage these strengths. This might include walking, dancing and/ or using music. Music can powerfully evoke memories, impact on motivation as well as provide rhythm and structure to support difficulties with memory. It is therefore an excellent method of exercise.
The Benefits
Exercise may improve thinking skills. A Chinese study (Lam et al 2012) found that mind-body exercises such as Thai Chi could improve cognition as well as have additional impacts such as improving balance and strength. Exercise is targeted as a potential primary prevention strategy to delay / reduce onset of dementia once someone has been diagnosed with mild cognitive impairment. The wider impacts of exercise on health outcomes are well documented, despite this many services fail to see the importance of it, and more specifically their role in supporting and enabling exercise.
Some studies have been completed to look at how effective exercise is in care homes at reducing the incidence of depression. Depression impacts on quality of life and pharmacologic treatments are not without their side effects. Some studies have found no evidence that moderate exercise in a care home had an impact on depression (Conradsson et al 2010). In contrast Edris et al (2009) had more success in providing a three week exercise plan, as found that it reduced levels of agitation. Agitation and depression are not directly comparable, and clearly variables will differ within this context. However, reducing incidences of agitation could have a direct impact on staff costs associated to working with challenge. Researching the impact of exercise on depression within a care home is a complex task, as the social environment, beyond the time of the exercise will potentially impact. Separating these variables in research is bound to be a challenge.
Conclusion
Despite the barriers, both in research and in delivery opportunities for people living in care homes to exercise must continue to be a priority. Factors to be considered include: building design, access to outdoors, effective pain assessment and management, and education on the benefits of exercise. There may be a wider impact on these enablers, including improved mood, better sleep and potentially improved nutritional intake.
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Bibliography
Ahlskog, E.J., Geda, Y.E., Graff-Radford, N.R. and Petersen, R.C. (2011) ‘Physical exercise as a preventive or disease-modifying treatment of dementia and brain aging’, 86(9).
Aman, Edris et al.(2009) ‘Supervised Exercise to Reduce Agitation in Severely Cognitively Impaired Persons’, Journal of the American Medical Directors Association , Volume 10 , Issue 4 , 271 – 276
Baker, L.D., Frank, L.L., Foster-Schubert, K., Green, P.S., Wilkinson, C.W., McTiernan, A., Plymate, S.R., Fishel, M.A., Watson, S.G., Cholerton, B.A., Duncan, G.E., Mehta, P.D. and Craft, S. (2010) ‘Effects of aerobic exercise on mild cognitive ImpairmentA controlled trial’, Archives of Neurology, 67(1), pp. 71–79. doi:
Conradsson, M., Littbrand, H., Lindelöf, N., Gustafson, Y. and Rosendahl, E. (2010) ‘Effects of a high-intensity functional exercise programme on depressive symptoms and psychological well-being among older people living in residential care facilities: A cluster-randomized controlled trial’, Aging & Mental Health, 14(5), pp. 565–576
Duzel, E., van Praag, H. and Sendtner, M. (2016) ‘Can physical exercise in old age improve memory and hippocampal function?’, 139(3).
Hoffmann K, Frederiksen K, S, Sobol N, A, Beyer N, Vogel A, Simonsen A, H, Johannsen P, Lolk A, Terkelsen O, Cotman C, W, Hasselbalch S, G, Waldemar G, Preserving Cognition, Quality of Life, Physical Health and Functional Ability in Alzheimer’s Disease: The Effect of Physical Exercise (ADEX Trial): Rationale and Design. Neuroepidemiology 2013;41:198-207
Hooghiemstra, A.M., Eggermont, L.H., Scheltens, P., van der Flier, W.M., Bakker, J., de Greef, M.H., Koppe, P.A. and Scherder, E.J. (2012) ‘Study protocol: EXERcise and Cognition in sedentary adults with early-oNset dementia (EXERCISE-ON)’, BMC Neurology, 12(1), p. 75.
Littbrand, Hã., Lundin-Olsson, L., Gustafson, Y. and Rosendahl, E. (2009) ‘The effect of a high-intensity functional exercise program on activities of daily living: A Randomized controlled trial in residential care facilities’, Journal of the American Geriatrics Society, 57(10), pp. 1741–1749
Lam, Linda C.W. et al (2012) ‘A 1-Year Randomized Controlled Trial Comparing Mind Body Exercise (Tai Chi) With Stretching and Toning Exercise on Cognitive Function in Older Chinese Adults at Risk of Cognitive Decline’ Journal of the American Medical Directors Association , Volume 13 , Issue 6 , 568.e15 – 568.e20
Lowery, D., Cerga-Pashoja, A., Iliffe, S., Thuné-Boyle, I., Griffin, M., Lee, J., Bailey, A., Bhattacharya, R. and Warner, J. (2013) ‘The effect of exercise on behavioural and psychological symptoms of dementia: The EVIDEM-E randomised controlled clinical trial’, International Journal of Geriatric Psychiatry, 29(8), pp. 819–827.
Schwenk, M., Dutzi, I., Englert, S., Micol, W., Najafi, B., Mohler, J. and Hauer, K. (2014) ‘An intensive exercise program improves motor performances in patients with dementia: Translational model of geriatric rehabilitation’, Journal of Alzheimer’s Disease, 39(3), pp. 487–498Follow Us
Tier 2 (Subject 6) Dementia Health and Well-being Training Course
This course outlines the importance of maintaining physical and mental health in relation to someone living with dementia. This course provides information on how to tackle: nutrition, hydration, pain, continence care and sleep. Participants will develop a basic understanding of holistic approaches to health, but are provided with some practical information in supporting activities of daily living. The course is mapped to tier 2 – Dementia Core Skills Education Framework (subject 6). This course is delivered in an engaging way, and participants get the opportunity to engage in experiential learning activities.
Explain why it is important to maintain good physical and mental health.
Describe how to identify a person’s heath needs including malnutrition, pain, dehydration, falls and fatigue
List the signs of delirium and the signs of dementia, recognising delirium is a medical emergency
Describe the possible impact, including psychological and social impact, of incontinence.
Describe the potential causes of, and impact of loneliness and the importance of maintaining social engagement
Describe possible ways to support ADL’s in a person centred manner.
What a delight to offer this info graphic about dementia in nature, as the first for 2017. Inspired by the brilliant Garuth Chalfont, who has made an excellent contribution to the field. Being outdoors, and connected to nature bring many benefits, and particularly to those living with dementia.
Often overlooked, this simple accessible treatment may bring opportunities to manage symptoms, engage with others and improve quality life. Being outdoors may connect people and trigger memories in a powerful, and potentially more sustainable way. I attended the MIND project conference recently where I was reminded that being in nature may evoke mindfulness, an effective treatment in its own right.
Last year we did a scoping review of relevant research in exercise and dementia. Here I discovered the role of ‘green exercise’ and if combined with others, in a social situation, may bring additional benefits to the brain. As we walk and talk, our brains literally grow! At dementia congress one year I remember hearing about a CST project that was delivered completely outdoors, supported by the sensory trust. I am not sure what happened to this, but think it’s utterly brilliant. We need more projects and more research into social engagement outdoors.
However, the utopia is far from the reality. There are many barriers in the way to achieving optimum access to outdoors. There are practical challenges around building design, and/or accessibility in our communities. Many individuals in paid care still do not understand the therapeutic value, so do not support or provide access. Being outdoors can be too cold or too hot, and these practical challenges sometimes seem unsurmountable. There are physical barriers too such as mobility challenges, fear or falling and/or pain.
Whilst we work hard in our training sessions, and info graphics to raise awareness of the benefits of access to nature, what is needed is more funding, and more opportunities. We need to spend public money wisely, and engender community support where possible. I am constantly in awe of the excellent work of dementia adventure and all those other excellent projects big and small going on. We would love to hear about them.Follow Us
In our work on the Vanguard projects in reducing hospital admissions to care homes we have been considering the role of technology within the care homes setting. Areas that we have been looking at include but are not limited to telehealth, I Pad, and more modern, possibly contentious technologies, such as virtual reality headsets.
When planning this programme we considered:
How might technology increase social engagement in the care homes, without replacing human contact?
How might technology be used to proactively monitor health, to prevent/detect delirium and / or reduce unnecessary hospital admission?
How might technology be used to promote physical exercise in care homes?
The picture in other areas may well be different, but for here, and for now, at least we seem to be lagging as we found a fairly limited take up. This is also representative of the many care homes that we train. However, the potential use of technology in dementia care has been gathering pace, as new technologies emerge onto the market. A recent coping review that was carried out by GIbson et al (2016) identified 171 product types and 331 services. However, many of these are unregulated, and have not been rigorously tested in research conditions. Despite this there is a significant pull for these technologies. One of the driving factors (although not the only factor) is how these technologies increase efficiencies.
Some definitions:
Assistive Technologies: ‘any device or system that allows an individual to perform a task that they would otherwise be unable to do, or increases the ease and safety with which the task can be performed’ (Royal Commission on Long Term Care, 1999)
Telecare: remote social care monitoring
Telehealth: Telehealth is the remote exchange of data between a person at home and their clinician(s) to assist in diagnosis and monitoring typically used to support people with Long Term Conditions. It comprises of fixed or mobile home units to measure and monitor temperatures, blood pressure, glucose levels and other vital signs parameters
The reasons to use technology are vast, and extend far beyond safety but might also include:
Increase engagement, support independence through multiple mechanisms (prompting memory, orientation, supporting motor skills etc), facilitate proactive and preventative health monitoring, improve wellbeing through multiple domains (including encouraging exercise) and relieve carers stress. Then there are the organisational benefits which might include better targeting of human resource, support communication across teams, support compliance and safeguarding through effective monitoring and reporting.
AT are used by different people in different ways. GIbson et al (2016) usefully categorised the AT into 3 camps: ones that are used by people with dementia, ones that are used on people with dementia and ones that are used with people with dementia. For each of these there is a different set of ethical questions, and differing drivers in design. Who is making the decisions about the purchase and use of these technologies? For informal carer’s the quest may be driven by questions like, how can this technology reduce the caring stress levels? Where these technologies are being used to unobtrusively reduce risks, such as monitoring technologies. How much of this is creating a false sense of security? (Nygard et al 2005).
The context
There has been significant investment in the community to respond to demographic challenges. Policy has stimulated investment in the Assistive Technologies (AT), with the Technology Strategy Board investing £25 million of matched funding between 2008 and 2011. However, whilst these technologies are more widely available in the community, at a practice level, there continues to be real challenges in the uptake, both in the community as well as in care homes. Yet the conversations continue about the evolving possibilities of technology. The Dementia Congress in Brighton this year, as well as the Alzheimer Europe conference in Denmark, featured presentations on ‘robots’. The conversations that ensued included ethics, as well as how these could be used in cashed strapped times.
Greenhalgh et al (2012) suggest that there are several conversations going on around the use of AT, of which ethics is only one. The ‘ethics’ conversation is mainly driven by the professionals working in the sector. Developers and ‘modernists’ are concerned with the benefits and use of AT in saving time, and creating efficiencies. There is also the ‘political’ conversation stating the economic benefits of the telehealth, and telecare markets and the role of industry in influencing, or managing vested interests. Then finally there is the ‘change management’ conversation which argues that there is a mismatch between the system, and actual work practices, and work needed to be completed to address this. These conversations create tensions in the development and uptake of AT, and there is boundless interconnectedness between these.
Nauha et al (2016) looked at the use of AT for people at home with a memory disorder. In this study they also explored how the use of these technologies can facilitate, and support the work of the care staff, together with how the technology is effective in supporting the person with dementia. An important consideration, if we are to address the concerns of the ‘change management’ conversations we need to be thinking unilaterally about the benefits of AT. This means looking at the benefits not only to the individual but also for the service.
Barriers
So as stakeholders continue to battle it out in different forum, on a practice level there is more concern about where and how do I source these technologies? Are they affordable? Will they work? How can they enable? How do they support carers both formal and informal? And finally, and possibly most importantly, how can they be used ethically?
Assistive technologies (AT) might include low tech, to high tech. These might include clocks and signage to support orientation. Devices which prompt and remind, such as medication dispenses, recorded devices or iPad technologies. Alerts and alarms, communication aids or technologies that support recreation and engagement.
Local authority social care support has traditionally been the largest supplier of AT, most of which are tele care, services like just checking can monitor movements / or lack of movements, and successfully identify issues, hopefully before they develop. In addition to telecare, telehealth is having an increasing role. In Croyden a pilot project was undertaken, which successful reduced the admissions to hospitals
Therefore, on a strategic level technologies are being introduced to enable us to work more effectively, to reduce impact on an overburdened NHS. However, many of these technologies are being introduced much later on post diagnosis, often where there are already significant challenges to an individual’s health and wellbeing. As local authority eligibility increases, often individuals are at crisis point before accessing these services, and along with that accessing information about suitable AT. To compensate for this many individuals are now looking in other places for up to date information on the range, and suitability of technologies. Sometimes unsuccessfully sourcing the right technology at the right price. Whilst there are some great websites, like www.atdementia.org which was set up some years ago, brilliant and comprehensive these ‘of the shelf’ products are being purchased without any proper assessment. As the major risk factor for dementia is age, many individuals are living with co-morbidity, including, but not limited to sensory problems, impact significantly on the application, and use of these technologies. In addition, individuals are often have cognitive challenges: memory problems, impaired judgement and visual perceptual challenges.
Cahill et al (2007) found for the AT to be utilised effectively, informal and care staff need to be available to support, show and encourage individuals to use the products. Therefore, what training is being provided to front line staff, and informal carer, on how to maximise the use of these technologies, and how many staff are reluctant because of unanswered ethical concerns?
Potential barriers to the use of technology:
Accessing timely and suitable information
Sourcing technology that works with comorbidity
Accessing suitable assessment
connection problems
stigma associated to use
costs and relative funding for technology
as much of the technology needs to be supported by others, training is needed
Another major factor, which is often overlooked and not evident in the research papers I have read is the impact of the cuts on the uptake and use of technologies. On the one hand, you might consider that having technologies in place will create efficiencies, however introducing new technology requires change. As we have seen with the introduction of the Home Spirit Tool home care services are simply too stretched to even entertain the idea of piloting new ways of working.
Ethical barriers
In addition to the potential barriers we have the ethical considerations to make. One of the principle concerns is how can technology be used to address loneliness, but without replacing human contact? How might we manage effectively the tensions between surveillance for safety and privacy. As technology evolves it pushes the boundaries around ethical concerns. For example, we have seen the introduction of Virtual Reality, augmented reality for the individual to simulate experiences. Supporters believe that this can support the recall of memories and positive emotion. However, is this a form of treachery (Malignant Social Psychology – Tom Kitwood)?
Conclusion
Despite these ethical challenges, we will continue to explore the benefits and application of AT in our work both in the development of the Home Spirit Tool www.homespirit.org, and in the development of our training. We aim to give our learners the confidence to explore the ethical dilemmas openly as well as engage the people that they support in these conversations. Particularly, how might AT enable us to positively risk take.
References
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Gibson, G., Dickinson, C., Brittain, K. and Robinson, L. (2015) ‘The everyday use of assistive technology by people with dementia and their family carers: A qualitative study’, BMC Geriatrics, 15(1).
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Hagen I; Cahill S; Begley E; Faulkner JP (2007) ‘It gives me a sense of independence’ – findings from Ireland on the use and usefulness of assistive technology for people with dementia. Technology and Disability 19 (2007) 133–142
Nauha, L., Kera nen, N.S., Kangas, M., Ja msa , T. and Reponen, J. (2016) ‘Assistive technologies at home for people with a memory disorder’, Dementia,
Nygård, L. and Starkhammar, S. (2007) ‘The use of everyday technology by people with dementia living alone: Mapping out the difficulties’, Aging & Mental Health, 11(2), pp. 144–155
Rosenberg, L. and Nygard, L. (2013) ‘Learning and using technology in intertwined processes: A study of people with mild cognitive impairment or Alzheimer’s disease’, Dementia, 13(5), pp. 662–677.
Sugihara, T., Fujinami, T., Phaal, R. and Ikawa, Y. (2013) ‘A technology roadmap of assistive technologies for dementia care in Japan’, Dementia, 14(1), pp. 80–103.
