Mental Health Awareness Week #MAW2017 – Read Sarah’s Story

Mental Health takes many forms and affects us in many ways, and it doesn’t discriminate between race, religion, colour or gender. It can gradually creep up on us or hit us like a truck. No 2 people will suffer the same.

 

I have struggled with mental illness for half of my life now.

I remember aged 17, being in the bath after another argument with my parents, thinking how easy it would be to just stick my head under the water and end it all.

 

Every teenager has their struggles and will say that their parents just don’t understand them, but this was especially true of mine. Even now, 15 years later, I still look back on my teenage years as a very traumatic time.

 

From the age of 18, I spent 7 years in an emotionally abuse relationship. It started with the odd accusation here and there, until eventually, it became an every day occurrence. Every time my phone pinged, he demanded to know who it was. If the person wasn’t female, then clearly I must be cheating. When I was 25, we finally separated and I was left alone with a house and all the bills to pay for.

 

My counsellor recently told me a saying that they use in her sector: “The road is full of potholes”. This was very true of this point in my life, only they weren’t potholes, they were an abyss that I was circling and about to fall into at any moment.

 

I recall driving home from work one afternoon and all I wanted to do was drive my car flat out into a brick wall. I knew then that I needed help, so I made an appointment with my doctor and was prescribed antidepressants and signed off work for 2 weeks. I will never forget my manager’s reaction to that note: “you could always just rip it up and get on with it”. Words failed me and I hurriedly left the office and didn’t return for 2 weeks.

 

Things got a little better as the tablets started to take effect but it wasn’t just the feeling low, it was the insomnia, the numbness and the anxiety that can accompany Depression. I didn’t sleep properly in weeks and this only hampered my recovery.

 

Over the following months, I became stronger and began to like living on my own, it was then that I very unexpectedly met my husband.

 

Within a few months of meeting him, I had weaned myself off the antidepressants and I felt amazing. We were married 9 months after meeting and shortly after we were posted overseas with the military. Moving away was the fresh start I needed, we made some great friends and had our two children.

 

So how can I still feel sad?

A question I have asked myself so many times. After all; I have the perfect marriage to my best friend and soul mate and we have two healthy and wonderful children.

So what can I possibly have to feel depressed about?

The answer is nothing. But Depression doesn’t need a reason.

 

My latest battle with Depression really started last year. I knew I was struggling so I went to the doctors and requested to go back on antidepressants. But as the year went on, my mental health continued to decline and after the loss of a close friend to cancer last July, things just got worse.

 

The thing with Depression though is that it doesn’t just affect you, it affects everyone around you. I became less and less tolerant with my children and I withdrew from my husband- some days feeling so angry with him just for sitting down on the sofa next to me. I wanted to scream at him, even though he’d done nothing wrong.

 

My husband thought it was all his fault that I felt this way, like he wasn’t enough to make me happy anymore. But it wasn’t anything to do with him or our children. The truth is; I still don’t know what caused it.

 

It wasn’t just my home life that was suffering, but my job too. I struggled to complete every day tasks and made so many mistakes.

I’m very fortunate to have a boss who understands and helped me to get back on my feet. I now know that if I’m having a bad day, I only have to let her know and she will support me as much as she can. This makes all the difference to my struggle.

 

By September last year, things were back at their very worst. I didn’t have the suicidal thoughts that I’d had previously because of my children, but I knew I needed more help. The doctor had doubled the dose of my antidepressants but this was not helping, so I sought a counsellor. I found her listed on the Counselling Directory website and instantly liked her from her photo.

 

I’ve lost count of how many sessions I’ve had with her, but every single one has helped to get me back on track and feel better. We’ve been through the ‘nitty gritty stuff’- the abuse etc. but I have left every session feeling a million times lighter.

I don’t have regular weekly sessions anymore, I just go when I feel like I need a bit of support or help. For me now, it’s a bit like an MOT for my brain when I need it.

 

Mental Health takes many forms and affects us in many ways, and it doesn’t discriminate between race, religion, colour or gender. It can gradually creep up on us, or hit us like a truck. No 2 people will suffer the same.

 

I’ve been lucky to make many new friends since my eldest started school last year, and I have been very surprised to learn how many of those other parents have been effected by their own mental health- some just the once, for others it’s ongoing. And it always seems to be the parents who are (sometimes rather annoyingly!) always happy. It just proves that, despite appearances, you never know what personal battle someone is fighting.

 

Don’t ever be afraid to ask for help; more people understand than you realise.

 

 

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Why we changed our organisation from a ‘for profit’ organisation into a Social Enterprise.

I started to write this blog at the start of the year. Normally this is a time most people take stock and ask how can we BE and DO better?  However, within our social care sector, this reappraisal is not new, but rather ongoing, and insidious.  We are constantly being asked, how we can DO better. For many services this has resulted in cutting back, and prioritising profitability.

However, what is the impact of this?  Is there a hidden cost of dwindling social care funding, creating highly competitive, low cost, low value services? Has this disproportionate focus on the turning a profit  taken us away from more ethical aspects of our work, as we forget to ask how can we BE better? Surely the test of how we can ‘BE’ better as a social care service lies within the ‘social impact’ that we have, not in the profit that we accrue.

About twenty years ago after a relatively short career in social work I became a proprietor of a social care business at the age of 27, and when I look back over the last two decades I see the factor which drove me to business was the freedom to BE the person that I wanted to be. Because of this, I get immense pleasure from my work, and my collaborations. I spend time working with the individuals that I chose, and I have the opportunities to learn about, and develop what I determine as critical, interesting and applicable. I am motivated, engaged and free to be innovative. My values are at the heart of my business, sometimes at the expense of profit.  Over the years my values have evolved. As a young entrepreneur, I was always interested in creating and sharing, however now I am more concerned about how these collaborations impact on our communities, collectively and positively.

Despite being a ‘for profit’ organisation, we shared our resources, widely and openly (with no material gain), and attempted to reach out to individuals and organisations through our work. Whilst we have had many supporters, we have also been met with some alarming responses: individuals proactively unfollowed us, and actively excluded us. It was disappointing and deeply demotivating. There appears to be a lack of trust in our sector: driven possibly by competitive, anti-collective forces.   Consider though what the possibilities might be for our sector where we are able to foster trust, and build alliances beyond the competitive limitations of market forces. What if we all shared common goals, the communities that we serve? What if there was a less of a ‘me’ mentality and more of an ‘us’?

The growth of a market was stimulated, in part with the introduction of the Community Care Act, and has relied on competitive forces, creating best value. However how effectively does this model work now, in this current climate? In 2012 the government introduced the Public Services Social Value Act in an attempt to get commissioners to consider the social impact of their buying power. However, this only applies to high value contracts. So what of all the other services, or individuals, purchasing services in their community? Whilst these services are regulated by ‘CQC’, many are driven by profit, and may not always be making their decisions in the interests of ALL of their stakeholders.  If we are to really make a ‘shared society’ work, should we not ‘expect’ that ‘social enterprises’ are afforded preferential treatment at a local buyer level? In 2015 there was a review of the implementation of the Public Services Social Value Act suggesting that the Act be extended to contracts below the public spend threshold. It is my view this could be extended further than suggested.

In the health care market we have already seen many services become ‘social enterprises’.  Health has long had an expectation that it should service all ‘stakeholders’, as since the introduction of the NHS it has been free at the point of delivery.

However, that is not the case for social care:   the expectation remains many providers maintain a ‘for profit’ status. Many business minded individuals identify opportunities in a growth market, particularly in the community, where the there is a growing need to support individuals with more complex levels of care. The question is, how sustainable is this in the current market? Does the ‘social enterprise’ model work better in this climate, and if so – should commissioners consider this as part of their market shaping strategy as part of a long term goal for smaller, as well as large organisations? Could this be applied across all types of services, particularly training services like us, whom should be embodying an example, as advocates of ‘best practice’.

So, as a proprietor what are your driving values? To make a profit or make a difference? Whilst on the face of it, it may be a little more complex than that, determining the overriding priorities will help to properly focus priorities on outcomes. As an education provider in social care we aim to buck the trend, and embody this change.

‘Social Enterprise’  is a more comfortable fit for us: synergy with stakeholder expectations and our activities. Through raising awareness, we aim to provide better insights into the experience and needs of the individuals we support in the social care sector.  From a business perspective, it seems to make sense as it is through trading, we may have a bigger impact in society.

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Press Release – 3 Spirit UK accredited for creating genuine social impact

PRESS RELEASE – 06th Feb 2017

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.”

 

 

 

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Dignity Action Day – Macro to Micro

Tomorrow is DIGNITY ACTION DAY. Follow the #DDA2017 for all the great working going on today to raise the importance of dignity in our services.

Over the last few months in developing our leadership courses we have been thinking a lot about the work that leaders do in inspiring and facilitating dignity in the workplace. The way staff are treated within the work place has an impact on their ability to deliver optimum care, and offer dignity. If we are going to tackle dignity in the workplace, should we not be looking at the bigger issues? Cuts in funding, and poor commissioning practices impact on dignity on the front line. The support that is provided to staff is influenced by the status that we bestow upon our care sector, which is STILL the most undervalued and underpaid role in our society.

 

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Benefits of Providing Access to Exercise in Social Care Services

exercise-and-dementia_web

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.

 

Are you interested in knowing more about this course then click here

 

If you would like to hear about other courses click here

 

 

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. 487–498

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Health, Wellbeing and Dementia

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.
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Dementia in Nature

nature-in-dementia_new_web

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.

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The Use of Technologies in Care Homes

at-and-dementia_web

Introduction

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.homespirt.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

Gibson, G., Newton, L., Pritchard, G., Finch, T., Brittain, K. and Robinson, L. (2014) ‘The provision of assistive technology products and services for people with dementia in the United Kingdom’, Dementia, .

 

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).

 

Greenhalgh, T., Procter, R., Wherton, J., Sugarhood, P. and Shaw, S. (2012) ‘The organising vision for telehealth and telecare: Discourse analysis’, BMJ Open, 2(4), pp. e001574–e001574.

 

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.

 

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