An apprenticeship means learning on the job, at any age. Apprenticeships are not just for young people. In the health and social care sector older apprentices often have great life experiences to contribute.
For apprenticeships of a higher level, individuals can already be working in the sector, and need to do an apprenticeship to advance career opportunities. However, to complete an apprenticeship, the learner is required to complete 20% “off the job” learning.
This 20% is likely to include the following activities:
Attending virtual classrooms
Contributing to forums
Completing assignments
Guided reading
Reflective diaries
Shadowing other members of the team
Participating in audits
Feedback/learning sessions with some of the people the learner supports
Meetings
We specialise in the delivery of Higher Apprenticeships in the Care Sector.
Whilst attending a Dementia Partnership Board Meeting (our first in this area) to review their priorities, prevention was discussed. A member raised the point we should determine what we mean by prevention and suggested in some areas the evidence base was weak. The board had a range of stakeholders, and was inclusive and committed to developing meaningful changes. However, within this local authority, like many others, there had been funding cuts to the person responsible for ‘prevention’. Reducing funding for risk reduction may save funding in the short term, but has long-term implications; possibly higher costs to both health and social care. So, whose responsibility is it to mitigate risk reduction in dementia. The individual, public services or is it everybody?
Three years ago, we developed our first resource: Dementia and Risk Reduction – see below.
It was developed from an excellent document produced by WHO in 2014, highlighting the international priority of risk management in dementia. Since then, our organisation has addressed these priorities through our work streams: training and consultancy and in the development of resources
During this time, we have debated whether to utilize the term ‘risk reduction’ or ‘prevention’ in the messages we give, as these words are sometimes used interchangeably despite having different meanings.
Since we have been highlighting modifiable risk factors on our programmes, our role appears to have evolved from simply being educators in social care to activists in health promotion. Sharing with our participants information for them to share with their clients, and which they may choose to act upon within their own lives.
In July 2017, The Lancet published a long-awaited paper on the ‘Dementia Prevention and Care’ by Gill Livingtone and colleagues (http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(17)31363-6.pdf): A comprehensive review of the current evidence on modifiable risk factors in dementia care. For anyone working in dementia care this document will prove to be valuable; It is not a paper that you can skim read, it is succinct and relevant in many domains.
Risk reduction, for dementia, may be considered on three levels:
Level 1 (primary): Interventions targeted before symptoms present
Level 2 (secondary): Interventions targeted at individuals who develop Mild Cognitive Impairment (MCI)
Level 3 (tertiary): Interventions targeted at individuals living with dementia and their carers. These interventions aim to slow the progression of the disease and potentially alleviate some of the burden, enabling people to maximize strengths.
Level 3 is where most of our work is targeted. We educate front line care staff on strategies supporting people to maximize their potential, which includes enabling people to stay in control. When supporting individuals, this could be making changes to the social and physical environment and considering the relationship between health and social care factors. This area of work may not be viewed as risk reduction in the traditional sense, but it plays a fundamental role.
Level 3
In the publication, many interventions are sighted ‘care’. However, these interventions may be considered as ‘risk reduction’, carrying the same level of priority as level 1 and 2. Within Level 3, we can consider risk reduction more broadly in terms of reducing the risk of increased levels of care, hospital admission or admission to care homes; all of which have a significant impact on the individual and society, including a financial impact.
A number of ‘evidenced based’ interventions were sighted in the recent paper including (but not limited to):
Timely diagnosis
Cognitive stimulation therapy
Cognitive training
Cognitive rehabilitation
Environment adaptations
Assistive Technologies
Communication, engagement and person-centred care
Medication (moderate effect)
Carer support, education, and CBT
Sensory stimulation
Optimal end of life care
High intensity exercise
Safeguarding
Optimising hearing and sight loss
We develop resources for many of these interventions and raise awareness of them within our day to day training.
However, we must be careful about framing dementia only as a condition to be ‘managed’ as it is both stigmatising and limiting; it reduces opportunities for self-management and self-determination. Rather, a ‘management’ narrative is perhaps necessary to assist systematic support to ‘managing’ the complexity of dementia. However, we need to be aware of different perspectives: dementia is multi-dimensional.
Perhaps as part of the risk reduction agenda for level 3, we need to consider:
What does dementia bring to individuals and communities? How can we reframe ‘loss’ as an opportunity? What can we learn about the positive power of vulnerability? Do diminishing cognitive skills lead to not being ruled by reason, but instead the heart, and if so what benefits might that bring? What does living in the moment, having insights and opportunity bring?
What personal resources are available to individuals to challenge the standard paradigm in dementia? Some of the negative connotations associated with dementia stifle opportunities. If we had a more inclusive society, how could this facilitate opportunities in individuals to develop personal resources, resilience, and capacities?
What, then, is the role of local authorities in using this evidence effectively in their work?
Level 1
Incorporate risk reduction strategies into the work with services that support people over a life time, such as learning disabilities (who have an increased risk of development of dementia). This includes risk screening people in their care and ensuring that training incorporates risk reduction
Where children are in the LA care a strategy should be in place to stimulate a life time love of learning (to build cognitive reserve).
Work with allied health services to support health checks for diabetes screening, weight management and hearing checks.
Consider specific modifiable risk factors (vascular) to BAME communities with targeted interventions.
Ensure that accessible information is available to the general population on risk factors and prevention strategies. Provide information accessible information to BAME communities
Make funding available to tackle social isolation in dementia and develop ways of measuring how effective this has been. Enforce NICE guidelines for Home Care, that relate to measuring outcomes, however, consider tackling loneliness as part of this.
Develop more integrated models of work. Work which is under way – however, skills development running to catch up.
Level 2
Work to embed risk reduction strategies in core training. Many individuals working in care and support services are already working with individuals that have MCI. L&D commissioners should ensure this is incorporated into their training programmes.
Ensure appropriate opportunities are available to people with MCI for engagement and to enhance cognitive skills through day centres, luncheon clubs, and community activities
Develop effective integrated working between health and social care providers to identify and address health factors in a timely fashion
Consider multi-model interventions which enable effective, integrated working between health and social care
Level 3
Consider inclusion and self-determination as risk reduction enablers
Offer comprehensive training opportunities to services to maximize on ‘evidenced based’ interventions. We are very fortunate in Hertfordshire as our local authority has long invested in this. We have developed over 17 different educational programmes which have targeted the list of evidence based interventions, together with tackling broader social psychological factors. Over the years we have trained over 13,000 people to think more broadly and to BE proactive in their work.
Develop their services to better support informal carers, recognizing the benefit and value of this in both economic and moral terms.
For commissioners consider the services you do business with. Ask whether the services you currently work with properly understand their role within risk reduction? How many have inclusive models of work? Put funding behind front line voluntary sector services and build the social enterprise model so we can work at a primary level in our communities
Develop co-production, tapping into the talents and assets of individuals living with dementia. As a very smart chap (Chris Mason) living with dementia said recently ‘If we get things right for those living with dementia in the community we get things right for everyone’.
Develop appropriate courses, and measure the impact training has in reducing unnecessary admissions to both hospital and care homes. Some residents only require short term treatment in hospital: for example, antibiotics, fluids, or x rays, but then may become ‘stuck’ in hospital leading to increased risk of hospital acquired infections and falls.
In our work, we have been commissioned to work on a Vanguard project that successfully reduced admissions to A&E from care homes. The programme included training aimed at supporting practitioners to detect the early signs of delirium -perhaps from a chest or urinary infection – and consider risk factors which may lead to falls, such as visual perceptual challenges and the physical environment. The programme also explored how positive psychology may impact on wellbeing.
In summary, we will leave you with this thought from the Dementia, Prevention and Care Paper:
Dementia, especially Alzheimer’s, is a clinically silent disorder starting in mid-life, whose terminal phase is characterized by dementia
In our work on the Vanguard projects in reducing hospital admissions to care homes we have been considering the role of technology within the care homes setting. Areas that we have been looking at include but are not limited to telehealth, I Pad, and more modern, possibly contentious technologies, such as virtual reality headsets.
When planning this programme we considered:
How might technology increase social engagement in the care homes, without replacing human contact?
How might technology be used to proactively monitor health, to prevent/detect delirium and / or reduce unnecessary hospital admission?
How might technology be used to promote physical exercise in care homes?
The picture in other areas may well be different, but for here, and for now, at least we seem to be lagging as we found a fairly limited take up. This is also representative of the many care homes that we train. However, the potential use of technology in dementia care has been gathering pace, as new technologies emerge onto the market. A recent coping review that was carried out by GIbson et al (2016) identified 171 product types and 331 services. However, many of these are unregulated, and have not been rigorously tested in research conditions. Despite this there is a significant pull for these technologies. One of the driving factors (although not the only factor) is how these technologies increase efficiencies.
Some definitions:
Assistive Technologies: ‘any device or system that allows an individual to perform a task that they would otherwise be unable to do, or increases the ease and safety with which the task can be performed’ (Royal Commission on Long Term Care, 1999)
Telecare: remote social care monitoring
Telehealth: Telehealth is the remote exchange of data between a person at home and their clinician(s) to assist in diagnosis and monitoring typically used to support people with Long Term Conditions. It comprises of fixed or mobile home units to measure and monitor temperatures, blood pressure, glucose levels and other vital signs parameters
The reasons to use technology are vast, and extend far beyond safety but might also include:
Increase engagement, support independence through multiple mechanisms (prompting memory, orientation, supporting motor skills etc), facilitate proactive and preventative health monitoring, improve wellbeing through multiple domains (including encouraging exercise) and relieve carers stress. Then there are the organisational benefits which might include better targeting of human resource, support communication across teams, support compliance and safeguarding through effective monitoring and reporting.
AT are used by different people in different ways. GIbson et al (2016) usefully categorised the AT into 3 camps: ones that are used by people with dementia, ones that are used on people with dementia and ones that are used with people with dementia. For each of these there is a different set of ethical questions, and differing drivers in design. Who is making the decisions about the purchase and use of these technologies? For informal carer’s the quest may be driven by questions like, how can this technology reduce the caring stress levels? Where these technologies are being used to unobtrusively reduce risks, such as monitoring technologies. How much of this is creating a false sense of security? (Nygard et al 2005).
The context
There has been significant investment in the community to respond to demographic challenges. Policy has stimulated investment in the Assistive Technologies (AT), with the Technology Strategy Board investing £25 million of matched funding between 2008 and 2011. However, whilst these technologies are more widely available in the community, at a practice level, there continues to be real challenges in the uptake, both in the community as well as in care homes. Yet the conversations continue about the evolving possibilities of technology. The Dementia Congress in Brighton this year, as well as the Alzheimer Europe conference in Denmark, featured presentations on ‘robots’. The conversations that ensued included ethics, as well as how these could be used in cashed strapped times.
Greenhalgh et al (2012) suggest that there are several conversations going on around the use of AT, of which ethics is only one. The ‘ethics’ conversation is mainly driven by the professionals working in the sector. Developers and ‘modernists’ are concerned with the benefits and use of AT in saving time, and creating efficiencies. There is also the ‘political’ conversation stating the economic benefits of the telehealth, and telecare markets and the role of industry in influencing, or managing vested interests. Then finally there is the ‘change management’ conversation which argues that there is a mismatch between the system, and actual work practices, and work needed to be completed to address this. These conversations create tensions in the development and uptake of AT, and there is boundless interconnectedness between these.
Nauha et al (2016) looked at the use of AT for people at home with a memory disorder. In this study they also explored how the use of these technologies can facilitate, and support the work of the care staff, together with how the technology is effective in supporting the person with dementia. An important consideration, if we are to address the concerns of the ‘change management’ conversations we need to be thinking unilaterally about the benefits of AT. This means looking at the benefits not only to the individual but also for the service.
Barriers
So as stakeholders continue to battle it out in different forum, on a practice level there is more concern about where and how do I source these technologies? Are they affordable? Will they work? How can they enable? How do they support carers both formal and informal? And finally, and possibly most importantly, how can they be used ethically?
Assistive technologies (AT) might include low tech, to high tech. These might include clocks and signage to support orientation. Devices which prompt and remind, such as medication dispenses, recorded devices or iPad technologies. Alerts and alarms, communication aids or technologies that support recreation and engagement.
Local authority social care support has traditionally been the largest supplier of AT, most of which are tele care, services like just checking can monitor movements / or lack of movements, and successfully identify issues, hopefully before they develop. In addition to telecare, telehealth is having an increasing role. In Croyden a pilot project was undertaken, which successful reduced the admissions to hospitals
Therefore, on a strategic level technologies are being introduced to enable us to work more effectively, to reduce impact on an overburdened NHS. However, many of these technologies are being introduced much later on post diagnosis, often where there are already significant challenges to an individual’s health and wellbeing. As local authority eligibility increases, often individuals are at crisis point before accessing these services, and along with that accessing information about suitable AT. To compensate for this many individuals are now looking in other places for up to date information on the range, and suitability of technologies. Sometimes unsuccessfully sourcing the right technology at the right price. Whilst there are some great websites, like www.atdementia.org which was set up some years ago, brilliant and comprehensive these ‘of the shelf’ products are being purchased without any proper assessment. As the major risk factor for dementia is age, many individuals are living with co-morbidity, including, but not limited to sensory problems, impact significantly on the application, and use of these technologies. In addition, individuals are often have cognitive challenges: memory problems, impaired judgement and visual perceptual challenges.
Cahill et al (2007) found for the AT to be utilised effectively, informal and care staff need to be available to support, show and encourage individuals to use the products. Therefore, what training is being provided to front line staff, and informal carer, on how to maximise the use of these technologies, and how many staff are reluctant because of unanswered ethical concerns?
Potential barriers to the use of technology:
Accessing timely and suitable information
Sourcing technology that works with comorbidity
Accessing suitable assessment
connection problems
stigma associated to use
costs and relative funding for technology
as much of the technology needs to be supported by others, training is needed
Another major factor, which is often overlooked and not evident in the research papers I have read is the impact of the cuts on the uptake and use of technologies. On the one hand, you might consider that having technologies in place will create efficiencies, however introducing new technology requires change. As we have seen with the introduction of the Home Spirit Tool home care services are simply too stretched to even entertain the idea of piloting new ways of working.
Ethical barriers
In addition to the potential barriers we have the ethical considerations to make. One of the principle concerns is how can technology be used to address loneliness, but without replacing human contact? How might we manage effectively the tensions between surveillance for safety and privacy. As technology evolves it pushes the boundaries around ethical concerns. For example, we have seen the introduction of Virtual Reality, augmented reality for the individual to simulate experiences. Supporters believe that this can support the recall of memories and positive emotion. However, is this a form of treachery (Malignant Social Psychology – Tom Kitwood)?
Conclusion
Despite these ethical challenges, we will continue to explore the benefits and application of AT in our work both in the development of the Home Spirit Tool www.homespirit.org, and in the development of our training. We aim to give our learners the confidence to explore the ethical dilemmas openly as well as engage the people that they support in these conversations. Particularly, how might AT enable us to positively risk take.
References
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.
Last week the Kings Fund and Nuffield Trust produced a report, ‘Home Truths’, demonstrating the impact of the local authority spending cuts over the last six years on social care. The report highlights the combined pressures on services, such as maintaining Fundamental Standards (CQC), working towards achieving the Living Wage, dealing with contract cuts, as well as coping with significant staffing shortages. Cumulatively these pressures have meant that many services have fallen short of demand and for some there have been serious failings. However, for the majority, the shortcomings are visible in delayed discharges from hospital, which has a negative fiscal impact.
The report highlights some of the strategies adopted by services to compensate for these cuts. For example, some providers are relying more heavily on privately funded clients to subside their local authority contracts. Some are actively identifying options for support in the wider communities and using volunteers to bolster their service.
The report warns that the social care sector will not cope against the continued planned cuts and additional sector pressures, and recommends three possible options to address the dismal outlook:
achieving more with less
a different offer
long term reform
Whilst the latter two can be debated over the longer term by politicians and senior social care figures alike, providers need to be getting on with the ‘what can we achieve for less’ more imminently. There is an urgent and critical need to think outside the box about how we can do things differently.
As part of the ongoing strategic review many services have been actively reviewing their resource input against their outputs and outcomes in an attempt to get more for less. Good business strategists understand that the skill lies in leveraging resources effectively to create a comfortable operating profit. This isn’t always about cutting back but rather doing things differently. Training is one example of a resource that can be manipulated for different outcomes. There has been a growing reluctance to spend on training, with more services opting instead to develop independent capabilities or deliver E learning in the hope that this widens the profit margin. However, in reality some of these ‘cutting corner’ decisions can impact on quality, leaving services ill prepared to ‘fire fight’ issues such as safeguarding incidences, health and safety concerns, complaints and/or poor service outcomes. Many of these matters often rear their ugly head at a time when services are logistically challenged, forcing the focus on resources toward just covering the job instead of on maintaining and improving outcomes.
On a more strategic level, within our local area some excellent joined up thinking has been going on. Integrated projects have developed, which have been supported by the pooling of NHS funding (Better Care Fund), aiming for smarter working through integrated practice. Our organisation has been involved in one of these projects, working with care homes to reduce hospital admissions. Hospitals are very disabling places for people living with dementia, and poor outcomes are typically observed; economic and individual. Clearly there is a lot of work to be done to upskill staff to ensure that there is a timelier reporting of health concerns through better quality observations, and ensuring that preventative measures are put in place to avoid unnecessary admissions.
One of the areas that has seen the largest cut in funding is community based services, such as support at home (homecare). Spending is down a whopping 30% despite policy objectives to support more people in the community. This is a significant cut in comparison to residential and nursing services which were only cut by 4 – 6%. Home care services now are delivering more hours for less money. So what solutions are there available for our home care services?
This key question has been the driving force behind the development of Home Spirit, a platform developed for home care providers. The platform equips services with the tools to literally think differently, be proactive and add value to their service.
The portal consists of a number of tools. The person centred planning tool has several potential domains which are selected by the client, and are based on their specific identified outcomes. It is easy to use and prints and uploads reports, making sharing easy. It avoids duplication, or having to write anything out so saves time. It can be completed on mobile while at the client’s home, and, with an easy to use navigation system, it has sensory appeal. The tool helps agencies to reduce operational costs in assessment and reporting. It can highlight risks easily, both those that are determined by the individual as well as the care agency. The report can be produced in a shorter version (similar to a one page profile) which informs busy workers in a simple snapshot HOW to provide the support. At £19 per month for as many reports as required, it is also excellent value.
The environment audit is intended to be a proactive tool. It may reduce hospital admission and risk of falls through environment assessment. It can be used by families and individuals to identify potential assistive technologies (a requirement of the NICE Home Care guidelines 2015), which include health monitoring options, safety and activity monitors, and leisure and communication technologies. These technologies now have a much wider scope and can promote human connection and tackle loneliness. Loneliness has been linked to poor health outcomes, leading to additional financial burdens on community and NHS services. Tackling loneliness through supported use of assisted technologies is only one of the many benefits that can be introduced by the tool. The environment audit tool also makes simple recommendations for environmental adaptation to improve independence. The environment tool will also make recommendations around how an environment can be adapted around a specific task for a person with dementia, and therefore informs and educates, offering a tailored support plan.
The ‘still my life’ post diagnostic tool is completely FREE to access and helps families to plan together to take proactive steps to manage the condition; this aims to reduce anxiety. One of the first questions asks the person to consider the difficulties they face and what actions they plan to put in place to mediate these challenges. The design of the tool aims to encourage people to rehearse their own strategies, helping them recall them with more proficiency, as well as have very clear goals on how to compensate for their difficulties. Another question prompts the person to consider aspects of life that they appreciate and value (positive psychology), this can have a direct therapeutic value. One of the questions guides individuals to complete appropriate legal planning. Local authority resources spent making ‘best interest’ decisions could be avoided by documenting decisions in a timelier manner. The planning tool provides accessible guidance on how these measures can be put into place. The tool also asks individuals to consider early interventions for nutrition and sleep. As 72% of people living with dementia are also living with another condition (co-morbidity), early strategies to support sleep and nutrition can have a positive effect, reducing risks of delirium and inappropriate admissions to hospital. The post diagnostic planning tool can be easily downloaded and completed on paper. This additional tool is potentially an asset to home care providers, as providing access to this resource as part of your service shows that you provide added value. Perhaps more importantly a tool like this provides hope, and motivates families and individuals to think proactively.
The circle of support tool helps to identify communities of support to build upon existing community networks and engender a sense of belonging and affiliation to the wider community.
The learning resources (infographics) available through the portal support staff, through bite-size learning, to observe better, develop better relationships, and improve reporting. The flexible resource reduces the need for staff to be removed for training at critical pressure times. Community services are now working with higher levels of need and the skills sets required are reflective of this. Appropriate investments need to be made in knowledge management. The resources available on this portal are specifically designed to work well in busy environments.
Therefore, while services are scratching their heads considering their next move to survive this hostile environment, we have been actively developing a solution. The benefits of the Home Spirit tool are potentially far reaching and offer a legitimate opportunity to services to do things differently and to achieve more for less.
Many individuals may struggle with sleep at various points in their lives and impaired sleep may impact upon quality of life. Less understood is the long-term impact of prolonged sleep deprivation. Sleep serves a restorative function in the brain, and has a critical role in our ability to process information and think clearly. However, could there be potentially more harmful and longer-term impacts of sleep deprivation? Alzheimer’s Disease International (ADI) published a report last year on potential modifiable risk factors relating to the onset of dementia; the report suggested decreased sleep may be a potential risk factor for cognitive decline, but indicated in the summary that these studies were limited and had a short follow time (WHO Dementia and Risk Reduction 2014). More generally, lack of sleep has been associated with poorer cognitive performance (Tworoger SS et al 2006) and increased rates of mortality (Gallicchio & Kalesan 2008).
Evidence suggests that there may be a number of complex neural processes at play which impact on the long term function of the brain. One theory suggests that lack of sleep may increase the risk of amyloid plaque formation (Holtzman et al 2013), which is part of the pathology of Alzheimer’s disease. Another study found that daytime sleepiness may be correlated with the onset of vascular dementia (Elwood et al 2011). Research in this area suggests that where causal relationships can be determined interventions may be possible to aid and encourage sleep, in order to delay the possible onset of dementia. Despite these individual research papers, the jury is still out on a definitive correlation between lack of sleep and the onset of dementia.
Whilst the research on the long term impact of poor quality sleep is interesting, the priority of services is the daily management of sleep difficulties, particularly for people with a level of cognitive decline or dementia, where sleep difficulties exasperate their difficulties. Where there are cognitive demands, lack of sleep only adds to the disorientation. Therefore, sleep can impact significantly on quality of life, can increase emotional distress, and can in some cases lead to transition to residential care (Pollak et al 1990). For many services working with people with dementia who experience sleep difficulties, it has become an expensive problem, often requiring higher levels of staffing during the night, or staff manpower to review increasing incidences of emotional distress and challenging behaviour during the day.
There are a number of different sleep disorders, and, whilst the prevalence of these disorders remains unclear, there has been some correlations between the type of disorder and the type of dementia (figure 1). One study showed that up to 70% – 80% of residents that live in a long-term facility experience sleep apnoea (Ancoli-Israel S 2006). Sleep apnoea is a sleep disorder which is characterised by disrupted breathing. There are other forms of sleep disorders experienced by people living with dementia, such as Restless Legs Syndrome, REM Behaviour Disorder and Periodic Limb Movement Disorder.
Restless Legs Syndrome
REM behaviour disorder: this is part of diagnostic criteria – a suggestive feature – can occur years prior to onset.
Periodic Limb Movement Disorder
Parkinson’s disease with dementia
Restless Legs Syndrome
REM Behaviour Disorder
Periodic Limb Movement Disorder
Sleep Disordered Breathing
Vascular dementia
Sleep Disordered Breathing
Restless Legs Syndrome is where an individual experiences discomfort in their legs, relieved by moving them; it may cause difficulties in falling asleep.
Periodic Limb Movement Disorder is when a person’s arms and legs move about during sleep. Often movements are repetitive and can be every 20 to 40 seconds, so can significantly disrupt sleep for the individual and family carer.
REM Behaviour Disorder is a condition in which individuals physically act out dreams during REM sleep, particularly in the second half of the night (Boeve BF 2004). This occurs because the normal mechanism for paralysis during sleep is disrupted. This can be dangerous and frightening for the individual with dementia, as well as a significant safety concern for families. It can lead to injuries at night. REM Behaviour Disorder can occur years prior to the onset of Lewy Body Dementia.
Sleep apnoea is part of a group of difficulties called Sleep Disordered Breathing. It is where your breathing is disrupted, with one or more pauses of breathing.
A common challenge for services is ‘Sundowning’. Sundowning may be caused by states being between sleep and wakefulness, possibly caused by sleep deprivation (Klaffke & Staedt 2006). The person may become agitated and disorientated. Presenting changes in behaviour may also be as a consequence of changing light levels, which triggers a reaction to the environmental clues. For example, a change in light levels may indicate to a person that it is time to finish work and return home; the person may then become agitated, particularly when they find it difficult to return home. When considering interventions to minimise agitation, this should always be done in the context of the person’s reality.
If the environment is too hot or too cold; too light or too dark; if the environment is unfamiliar (potentially as a consequence of transitions in care, or as a consequence of memory problems), this can be distressing, and cause significant anxiety impacting on a person’s ability to fall asleep. Night time may also be a lonely experience for many people with dementia.
Some of the main interventions to treat sleep disorders are pharmacological. However, side effects of medications can exasperate cognitive difficulties and increase the risk of adverse outcomes such as falls (Aviden et al 2005). There has been some research linking the use of benzodiazepine to an increased risk of Alzheimer’s disease (Sophie Billioti de Gage et al 2014). Commonly used medications like Donezepil can stimulate the cholinergic nervous system increasing the risk of disturbed dreams (Kitabayashi 2006). Medication prescribed for a number of co-morbid conditions can also interfere with sleep.
There are a number of other factors which may impact on the quality of sleep: pain, depression, anxiety, diabetes, depression, arthritis and renal failure. A medical review of co-morbid conditions may help to address some concerns. 72% of people living with dementia also live with another condition.
Research carried out in a community setting in New Zealand (Gibson, Gander and Jones 2014) found that there were 3 main areas for developing coping strategies: 1) strategies related to the sleeping environment 2) safety issues surrounding sleep and night time waking 3) techniques to relax at night and stay awake during the day. Services could benefit from distinguishing these categories as a useful framework for possible interventions.
Another area of interest in the treatment and support of sleep disorders is the use of ‘bright light therapy’. The mechanism that controls the wake-night cycle is called the circadian rhythm; the daily light–dark cycle is the primary synchronizer responsible for supporting the circadian rhythms to the 24-hour day. Light helps to maintain the circadian rhythm and can be introduced artificially to help reset those rhythms. Bright light therapy has been well researched in the area of dementia care and sleep. One study found favourable results when combined with the use of melatonin (Dowling et al 2007). Melatonin decreases when a person develops Alzheimer’s disease (Liu RY et al 1999). Simple environmental changes can be also be made to ensure that an individual has more access to light during the day; ensuring that there is adequate outdoor space, ensuring that curtains are pulled back during the day and the light fittings are the appropriate strength. Other simple mechanisms include relaxation therapy or having a quiet time before bed. Exercise has also been found to improve sleep (Baehr 2003) and could be potentially used as an effective treatment. A vast range of assistive technologies which enhance safety at night are now widely available.
Support services need to have in place a holistic management plan to respond to sleep disorders; a strategy to not only ensure improvements in quality of life, but also reduce the costs of responding to behavioural disturbances.
Things that you can do:
Environmental adaptations, such as noise and light levels
Assistive technologies which help with safety at night
Improving the dementia environment at home
Jun 2014
CAROLINE BARTLE provides a comprehensive checklist for identifying areas of the home that could be enhanced to support and improve the quality of daily life for the individual living with dementia… read more
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