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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Benefits of Providing Access to Exercise in Social Care Services

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.




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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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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The Use of Technologies in Care Homes



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.


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 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)?


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, 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.



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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Ageing, sensory loss and co-morbidity

According to the Department of Health (2013) there are an estimated 15 million people with long term conditions which cannot be cured including dementia, hearing loss, diabetes, sight loss, stroke.  In many cases long term conditions are linked to the ageing process.

Age-related damage is the single biggest cause of hearing loss, and 44% of over-70 year olds have moderate to severe hearing loss (Joining up, action on hearing loss). People with hearing loss have problems recognising speech, especially in challenging environments. They need to concentrate more than people with normal hearing to pick up as much as possible from the acoustical world (Arlinger 2003).

Uncorrected hearing loss gives rise to a poorer quality of life, reduced social activity, and increased symptoms of depression.

There are almost 2 million people living with sight loss in the UK.  Sight loss may be due to long term conditions.  For example diabetes: over 1 in 20 people in the UK have diabetes and are at risk of sight loss (diabetic retinopathy).   It is estimated 60% of people following a stroke have visual problems. Sight loss is linked to age with 1 in 5 people over the age of 75 living with sight loss (Access economics 2009).

Difficulties with vision are not always obvious. Signs of sight loss might include:

  • Person reports flashing lights or patterns in front of their eyes
  • Peering closely at faces and print
  • Needs brighter lighting
  • Moves more slowly: stumbling
  • Starts to touch objects and people to find way around

Sight loss impacts upon a person’s wellbeing including increasing the risk of social isolation and risk of injury through falling: visual impairment is associated with falls and hip fractures. NICE has emphasised the importance of visual assessment in prevention of falls (NICE CG 161 June 2013: Falls in older people: assessing risk and prevention).

Appropriate lighting may help to reduce the incidence of falls. By the age of 75 a person needs four more times the light that a person needs when they are 20. As the eye gets older it has more difficulty managing glare and changes to light levels, therefore avoiding sudden changes in light levels will help.

Addressing communication needs is essential to enable people to play a role in managing their long term conditions: for example diabetes.  As older people may have co-morbidities and sensory loss, there are implications for services:  Services may need to consider how to support a person’s sensory loss to ensure they may understand information about their condition and how they may manage their condition.

The greater the age of a person, the greater the risk of developing a dementia: 820,000 older people have a diagnosis of dementia in UK (Alzheimer’s Society) and therefore older people may have dementia, sight and hearing loss.  Dementia, together with sensory loss, can make communication more difficult.

Some types of dementia can cause visual problems and sight loss may make the effect of dementia appear more pronounced.

A person living with dementia uses their sensory and cognitive skills to understand the world around them. If one aspect is damaged, for example cognitive skills, a person with dementia becomes more reliant on their sensory skills to transfer information to the brain to help them make sense of the world around them. The analysis of the information will be impaired if the person has damage to certain lobes of the brain: for example: if there is damage to the occipital lobe, the person may have difficulty recognising an object or with colour contrast. These difficulties are known as ‘visual perceptual problems’, and may present as illusions, misinterpretations or misidentifications.

A person that is older, and living with dementia, may need additional help to manage their sight loss and/or hearing loss. Problems with memory may mean that the person forgets to put their glasses on, or forgets where their glasses are. Memory aids visual or auditory (e.g. recorded message) may be helpful. A person living with dementia will uses clues in the physical environment to understand what they are doing, or what is happening next.  Appropriately supporting sensory skills may help them to do this.

Helen Behrens (Trainer 3 Spirit UK)

Sight Loss_WEB_


Access Economics, (2009). Future Sight Loss UK 1: The economic impact of partial sight and blindness in the UK adult population. RNIB.

Department of Health (DH) (2013) Improving quality of life for people with long term conditions accessed 7/01/2016

Arlinger S (2003) Negative consequences of uncorrected hearing loss––a review International Journal of Audiolog; 42:2 S17–2 S20

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Deprivation of Liberty – Are we spending public monies wisely?

Deprivation of Liberty – Are we spending public monies wisely?    Trish O’Hara April 2015

I for one, am fully aware of the necessity of adhering to Article 5 of the ECHR and delighted that Lady Hale pointed out that however golden the cage, it is still a cage.
But, the new threshold following the Cheshire West ruling :-
Continuous supervision and
Lacking capacity to consent to remaining
And how it falls within the Human Rights legislation:
The objective element: i.e. that the person is confined to a particular restricted place for a non-negligible period of time;

The subjective element, i.e. that the person does not consent (or cannot, because they do not have the capacity to do so) to that confinement;

State imputability: i.e. that the deprivation of liberty can be said to be one for which the State is responsible.

seems to have created an unprecedented amount of paperwork for those who, perhaps, need to be focused on emergency situations in hospital.

I am fully behind the new ruling for those living in residential care homes, nursing homes and hospices but am not sure this is money well spent on those in Intensive Care Units and in transportation from one hospital to another. It seems to me that those completing the assessments – such as Section 12 doctors and Best Interest Assessors are in the lucrative situation of charging £250 or so to assess people who are sick in hospital for a week or so. The nursing staff having to make applications, to spend time with the assessors – all of which is time away from using their expertise in keeping the person alive. I am aware that on many occasions, assessors have gone out to complete an assessment and the person has either gained capacity or indeed died or been discharged. I expect the assessors are still paid for their time and yet more public money is swallowed by this over-zealous interpretation of the ruling.

Of course, when a patient is resisting treatment and needing restraint, there needs to be protocols in place to ensure it is to maintain the life of the person, but can this not be regulated within ordinary hospital procedures?

Public monies are a dwindling resource as services face further cuts. Surely, there needs to be a common sense approach to deprivation and when it is necessary to authorise it.

I understand that new guidance is due to be published in 2017 which I hope recognises the paper driven exercise that often seems both pointless and expensive.

Yes, all patients should be informed and asked to sign consent for a time when they may not have capacity, following an operation and yes the MCA is a wonderful piece of law that protects the rights of all of us. But, the idea that a person who has suffered perhaps a head injury in a road accident  and needs to take an ambulance for numerous hours to a specialist hospital needs a DOLs seems to me to be wasting peoples time and money.

I am not sure there is enough emphasis yet on getting this right where it needs more attention, time and money spent.

Are there enough home care providers who are involved in supporting a deprivation in a persons own home, not registered, trained in understanding liberty?

Do families understand that deprivation of liberty may be seen as false imprisonment?

Do enough care homes understand the right for people with capacity to make unwise decisions?

Do enough supported living services realise that they may need to apply to the court of protection if they are depriving a person of their liberty?

Surely, these are the areas of real concern. And where assessment and monitoring is most needed.

I await 2017 publication with much anticipation.


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Wellbeing is Outcome by Trish O’Hara

Wellbeing is Outcome – by Trish O’Hara March 2015

So the opening chapter of The Care Act is all about wellbeing. I presume every agency has wellbeing in their mission statement. We talk about wellbeing all the time in services today. It is the main driver of our delivery. It is how we are measured. It is the point. And yet, in my experience, practitioners struggle to define it.
Let’s be honest, care packages are created on the back of need, not want. Budgets mean that only ‘need’ is eligible. Any social worker who thinks their assessment processes are person centred must accept that their assessment processes are purely needs led. Person centred planning is aspirational and dreams led – it’s about want not need. What is important for the person is often in direct conflict to what is important to them. Whilst a person’s care package is based on need – the service providing said package is then measured on outcome. This means the provider must know how to move on from the initial assessment and turn the process on its head – still making sure that the person is in receipt of the service they are paying for.
This is not easy.
In essence, the budget meets the persons needs – but your service will be measured on the persons wellbeing and outcome.
So let us define outcome focused practice;
Input The resources required to provide agreed service
Activity The action plan that delivers said service
Output The service is evidenced as delivered
Outcome How this makes the person feel
An example to help us as follows;
Colin is a man with Down Syndrome and a mild to moderate learning disability. Colin has had a life long dream of meeting Elvis in Vegas. Colin lives with 5 others in a registered care home. Colin has the capacity to make his own decisions in the main and chooses to eat very surgery and fatty foods. Colin has diabetes and is about 5 stone overweight which is putting a great strain on his heart and effecting mobility. Colin often refuses his medication and has uncontrolled epilepsy with several seizures per day. Colin is very gregarious and friendly, often singing Elvis songs and making people around him feel good. The staff at his care service have spent years attempting to support Colin to make ‘better’ decisions about his diet and medication. He ignores them. Colins mum is very involved in his care and is worried about his health.
It is when Colin begins a person centred plan – using PATH that his life changes.
Starting with the dream – Colin is in Vegas meeting ‘an’ Elvis.
Colin has a hotel room and a ticket to an Elvis concert
Colin is on the plane with a ticket, passport and visa
Colin has saved £3500
Colin has permission from his GP and insurance to fly

We can see there are a myriad of barriers to this trip. We can see that there a many risks.
Colin tells the staff his dream – staff work from the dream to support Colin to take control over his life.
Colin is excited about going to Vegas. Colin takes his medication without fail and even agrees to a blood test. Colin actively involves himself in healthy eating and manages to lose 3 stone. Colin chooses to walk from the bus the final mile to the day service every day – this was his idea. Colin no longer drinks fizzy drinks. Colin is offered money from his mum and his uncle toward the trip. Colin saves and budgets toward his trip. Colin goes to see Elvis impersonators in the UK. The GP agrees that Colin is now fit to fly. Colin flies to Manchester to see family who he had lost touch with and to see how flying felt. Colin gets a passport.
Let’s use the language to describe events.
Input:          Staff time – Actions plan creations – Appointments with health professionals
Action:        Nutrition Plan, Exercise Plan, Budget/Savings Plan. Colin begins to shop, cook and eat according to plans – along with medical appointments, taking of his medication – controlling his epilepsy and blood sugars.
Output:       Colin goes on his dream trip to meet an Elvis in Vegas
Outcome:    Colin has outcome long before output – Colin takes control of his health, his diet, his life. Colin loses weight, becomes more active, controls his seizures and enjoysa full active life in his community. Colin makes plans, budgets and makes decisions.
It is often presumed that outcome comes after output, but as you can see by this example, often outcome arrives before output. In fact, Colin may never get to Vegas, (although I jolly well hope he does) – but still the outcome comes pouring in.
Staff have been working on Colins health and diet for years – but never before had Colin engaged in it. Colin needed to be heard. Colin wanted a trip to Vegas to meet Elvis, which was seen as impossible – Evidently, people believing in Colins dream and supporting him to work toward it – meant that he felt in control, empowered and made his own great steps to achieve his dream. The outcome is clearly filled with evidence of wellbeing.
It is this example that helps us think about what we measure. Output is not where we stop and is not what we measure.  Wellbeing is outcome – and it is wellbeing that must be documented as evidence that we are providing the services that the person is paying for – Not need.

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‘Oiling the Cogs of the Brain’

Last year the Care Act became law signifying the government’s intention to overhaul the care system. With an ageing population, our dementia care costs are a staggering £23 billion pounds per year. The Care Act aims to do things smarter and is underpinned by some driving political ideologies; society cohesion and the power of prevention. Both of these ideologies align with the trends that we are seeing in research and practice in dementia care. For example:  over the last few years, there has a shift from searching for a cure by researching dementia in the later stages to some focus on prevention over a ‘life course view’ , exploring risk factors to determine the nature, and cause of onset. The Care Act echoes this from crisis management to prevention, however in this context it is far more about preventative measures in the social environment; the powerful application of psychosocial therapies in dementia to maintain skills, manage symptoms and in some bolder aspects, to foster some level of cognitive rehabilitation. It is about the power of self-determination, person centred support and education.

There is much interest politically on how such interventions can reduce the economic burden by both delaying the admission to residential care and improving wellbeing. For me, COGS (a day service model based on CST) provides an almost perfect solution to the objectives of the Care Act in meeting the needs of people with dementia. One of the key themes from the Care Act is prevention. COGS may potentially delay the progression of the disease by stimulating the mind, by building cognitive reserve, whilst at the same time providing valuable respite care to family members (another key goal of the Care Act). So why, why why has this service not been taken up by the masses?? The answer to this continues to baffle me.  This may be because behind this ambitious vision is a single person, working alongside the good and the great to muster together just enough resources to get the initiative of the ground. The lack of take up may also be because it has not been supported by the powerhouse of the universities, who are able to bank roll research to ensure its evidence base, and worthiness of funding. However, there are many services operating out there, very successfully without such support. Despite the steady growth of the project, the slowly evolving nature of COGS has enabled the creator to protect its core values, fight for what is right which in turn has ensured good outcomes from the project. The core essence of a promising social enterprise can be lost, in the rush to turn the profit, when developing it to a national scale.

Many of my days are spent reading around different areas of research and practice in dementia care. Every once in a while I will come across something very interesting, that starts to fire off my brain cells in a sort of frenzy of excitement. Something that I call a ‘light bulb’ moment, where I start to draw the links between isolated research papers, the stories I have been told in training and the gaps I see and hear about daily in service provision. One of these moments was when I met and got to know Jackie Tuppen the creator of COGS. COGS is day service model that has been developed from Cognitive Stimulation Therapy (CST).

Jackie Tuppen is an Admiral Nurse who could see in her past practice that there were many people left abandoned, without hope following a diagnosis. Whilst there were patches of CST available in memory clinics these services are time limited, restricted by funding. Jackie herself is always cautious to make the point that CST has an evidence base, and is therapeutic whereas COGS has no such evidence base, is not therapy but instead stimulation. I beg to differ, her humble attitude has always made me value her even more for her amazing achievements. I am hoping that this blog makes its way to a potential PhD student to consider one day to take up her project to help build the evidence of its impact. I have always suggested to Jackie that she undertakes some level of cognitive testing prior to and after the clubs, however she has always insisted that the only measure of effectiveness she seeks is that of wellbeing and upon reflection she is right. The small scale qualitative work that she has completed on the project shows remarkable outcomes.

Members: “Happy”, “improved my concentration”, “more relaxed“, “company with other people equal to myself”, “keeps my mind active”, “I’m aware what is coming up”

COGS has its origins in Cognitive Stimulation Therapy, or CST which was developed by Aimee Spector and Martin Orrell and their team at UCL in 2003. A systematic review was carried out of the evidence for psycho-social treatments that worked and the identified interventions were utilised in the development of CST and thus, as an intervention it has its origin from  a broad framework. Some of the interventions incorporated include reality orientation, music therapy, validation and reminiscence. CST is not just about what is delivered but also how it is delivered with Person Centred Care being the central theme, evident in its principles. The ‘how’ and ‘what’ is delivered are inter- linked, and dependent on each other. In 2006 National Institute for Clinical Excellence in the UK – NICE, recommended that CST should be offered to all people in mild to moderate stages of the condition. In 2012 the World Alzheimer’s Report recognised and publically advocated the use of CST. The CST model is delivered over fourteen session delivered over two hours a week whereas COGS is designed to work over  a longer period of time: The day runs from 10am to 3pm, every week, for as long as a member can benefit from the stimulation. It provides the opportunity for them to recall or develop new skills in activities. It also provides the family/carer/significant other with five hours of valuable respite. The five hours respite, whilst their relative attends the Cogs Club, has been described as “a lifeline”.

Facilitators of the COGS groups receive training and on-going mentoring from Jackie herself. The approach used by the COGS club, is a skilled approach, fostering and nurturing a positive environment where everyone feels included. Having the right social environment is critical for the learning to take place. Individuals are welcomed by name and through an activity individuals are encouraged to consider the aims of the session. Fostering these intrinsic goals are central to wellbeing, much like instilling hope is. CST has a number of other ‘guiding principles’ that must be adhered to, which are whole heartedly adopted by the COGS clubs.  These principles draw on the vast range of different, evidenced based non-medical therapies noted above, but also includes what we know about memory, cognitive function, neuroplasticity and learning theory (explicit and implicit learning). The therapy surely should be congratulated for the breadth of its framework, drawing from very extensive research in a number of fields. As a practitioner, becoming trained and competent in CST and COGS ultimately leads to truly embracing the bio-psychosocial sphere of dementia care; understanding how also we can effect change on a physical level through the development of new neural pathways simply by the way we treat people, and the opportunities we give them. Some might argue that this is an over-simplistic view, however it is testament to the power of the social model of care, and our understanding of the interplay between both medical and social models, and that this may hold the key to the most effective treatments for dementia care available to us today

So I write this blog as an appeal to all of the commissioners out there. Get savvy, and use the COGS model to start to meet the demands of the Care Act for individuals living with dementia. The COGS model costs between £12 – £30 per person, which is a cost saving on similar projects. The costs vary, as is dependent on the variables such as venue. However I truly believe that with some joined up thinking and collaborative work these costs could be sustainable in a large scale project.

I am very excited to take this model with me to New Zealand in a couple of weeks. I am hoping that they might embrace the philosophy and spirit of the COGS brand.

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