PEARL Dementia Service Year One Report

Transcription

1 PEARL Dementia Service Year One Report Issue 1 October 2010

2 Contents Foreword by Dr. Pete Calveley Chief Executive Officer Four Seasons Health Care Executive Introduction Dementia in the UK The UK dementia challenge ahead Introducing the PEARL programme Developing excellence in dementia care Putting PEARL into practice Training is only the foundation Changing the culture Alternative therapies and the environment Concluding summary Section One: Staff Training Resident experience training Malignant social psychology The PEARL within - person centred care & life story work Dementia Care Mapping - the residents perspective Staff Communication - the power of effective communication Distressed reaction or challenging behaviour? Resident Communication Section Two: The Environment and Activities Common Themes Activities and Alternative Therapies Doll therapy Animal assisted therapy Music therapy Sensory rooms Reminiscence therapy Rummage & memory boxes Personal activities & working with relatives Section Three: Impact & Early Findings Early findings Conclusion Challenges PEARL recognition The future of dementia care Appendices Appendix 1: The key themes of PEARL Appendix 2: Accredited homes and timescales Appendix 3: Introducing experiential taxonomy Appendix 4: Case studies

3 Foreword Those of us who are involved professionally in dementia care are aware of its symptoms and could probably recite them without hesitation, however it is worth pausing now and then to remind ourselves what it really means to be someone living with dementia. If you have dementia, you may experience memory loss that is becoming progressively worse and so you find yourself unable to remember recent events. You may struggle to find the right words to say what you mean. You may become increasingly disorientated and confused about the time of day. You may have trouble thinking clearly and your reasoning and sense of judgement may deteriorate. You may find yourself struggling to do things that you used to do easily. You may lose your self confidence, feel anxious or depressed and become withdrawn, or your frustrations may spill over into temper with yourself and those around you. Unfortunately you may experience a combination of a number of these symptoms or all of them. Having an understanding of how these symptoms may impact on the life of a person with dementia and those close to them leads to an appreciation of the challenge for healthcare professionals - whether they are in the public or private sector - who are trying to deliver care that makes a positive difference to people living with dementia. Looking back to four years ago when I initiated a programme to develop a specialist dementia care practice in the organisation that I lead, Four Seasons Health Care, I thought that a fundamental part of the challenge facing us was to re- define what we mean by good dementia care, before we could know if we are providing it. Then to find ways to help those living with the symptoms of dementia to let us know when we are making a positive difference for them and when we are not. The start point for our team was to question accepted perceptions and our established practices. We looked for examples of good practice anywhere in the world we could find them. We consulted with recognised authorities. We borrowed a lot, but not all, of this collective wisdom and built on it in developing our specialised dementia care programme. We designed original approaches of our own. We measured outcomes. We ran pilot programmes and modified our thinking and approaches as we learned from them. Now I have great pleasure to be writing a forward to this report that summarises the lessons we have learned and what we have achieved in the first year of implementation of the PEARL specialised dementia care programme. I would say that the programme was almost three years in development but that would be misleading as it would suggest development has ended and we have learned all we need to know. Rather, this should be read as an interim report of work still in progress and far from complete. That said, I believe we are able to offer some insights - supported by measured results - that might contribute to furthering the understanding and development of good dementia care. 1

4 Among the principles of the PEARL specialised dementia care programme, those that to me seem to be the most fundamental, may also seem to be the most self-evident now, but that was not always so. These are some of them: recognition that dementia care is a specialist practice area rather than an extension of residential care. Selecting staff for their aptitude for this demanding but enormously fulfilling role and supporting them with training to develop the specialist skill sets needed. An operational system and monitoring to ensure that the good practices learned in training are carried through into everyday care in the home. Crucially recognising the individuality of each person living with dementia; investing time to talk with them and family members to get to know the person and something about their lives and interests and person centred care with an individual care plan developed specifically for them. Never forgetting what it means to be someone living with the symptoms of dementia and being sensitive to that reality. This last point has led us to re-define some of the language of dementia care. For example, recognition of what used to be described as challenging behaviour (and still is in many care environments) is more appropriately defined as a distress reaction. Think about the implications of changing just those two words. Dementia care is enhanced by specialist therapies that are described in this report including music, sensory rooms and collections of items that help the resident to reminisce and by an environment that supports a level of independent living. So how do we know it is all having a beneficial effect? There are various indicators, including a dramatic reduction in the need for anti-psychotic medication, reduction in distress reactions, weight stabilised or lost weight regained. Then there is a wealth of heart-warming anecdotal evidence from relatives and friends. What I have noticed is that on entering a PEARL specialised dementia care home there is a different atmosphere. It is calmer, less frenetic and residents are more alert and engaged. They are happier. Importantly, the staff who are providing dementia care take pride in knowing that it is a specialist role in which they can make a real difference to people s lives. In turn, I am proud of what they achieve every day. Ultimately benchmarks and best practice will be set by the goals and strategy rolled out by the government and improving dementia care in homes. I have no doubt this will vary according to the level of resource available and what each care home is able to support and implement within its own parameters. We are proud to be at the forefront of best practice and the development of dementia care and help illustrate the positive results of a specialist dementia care service. This report acts as a milestone in our continued ambition to provide outstanding care with the wellbeing of our residents as always at the forefront of all of our actions The final thought I would like to leave with you as you read this report is that healthcare professionals and wider society have made a lot of progress in the understanding and practice of dementia care in the past few years - but perhaps that only serves to indicate how much more there is to learn. Dr. Pete Calveley Chief Executive Officer Four Seasons Health Care 2

5 Executive Introduction A new case of dementia occurs approximately every three minutes in England and Wales and this rate is forecast to increase as the population ages. Dementia is a group of related symptoms associated with an ongoing decline of the brain and its ability to function. It affects people's reasoning, language, memory, understanding and judgement. Those symptoms in turn alter behaviour and personality. Dementia impacts even on the closest relationships. It presents unique challenges to those who provide care for people with dementia. Understanding of those challenges by healthcare professionals and wider society has improved. We don t have all the solutions. We don t yet even know all the questions. But we are learning. There are currently an estimated 750,000 people in the UK with dementia. One in 14 people over 65 years of age and one in six people over 80 years of age has a form of dementia. Government recognition of the need for emphasis on improving both the understanding and practice of dementia care has brought into sharper focus the way in which it is delivered. Over a third of the people with dementia live in a care home and it is estimated that over 60% of people living in care homes have a form of dementia. The key questions to be addressed by professionals responsible for delivering dementia care and by every care home are: How do we know that we are providing good dementia care? What do we look for? How do we measure it? Those are the questions that the CEO of Four Seasons Health Care, Dr Pete Calveley asked in 2007, before government highlighted this as an area of concern. A former GP and Primary Care Trust director and Executive Chairman, he was dissatisfied with what was then the accepted practice in dementia care and wanted to challenge the status quo. Dr Calveley assembled a team and together they developed a concept of creating a specialised approach to dementia care, supported by a rigorous accreditation scheme. That concept was the beginning of the pioneering and award-winning PEARL (Positively Enriching And enhancing Residents Lives) specialised dementia service. Four Seasons Health Care has invested heavily in developing the new PEARL service and spent the last two years putting the theory to practice by implementing this engaging specialist approach to dementia care. The PEARL programme has since progressed from the pilot stage providing Four Seasons Health Care with significant insight into the challenges faced by the care home sector. The excellent results achieved and positive feedback from the pilot scheme go a long way to validating the lessons learnt and recommendations of this report. One year on Four Seasons Health Care is able to contribute to understanding and advancement of best practice in meeting the challenges of caring for people living with dementia. 3

6 Dementia in the UK The Alzheimer s Research Trust Report 2010 described Dementia as a group of symptoms associated with a progressive decline of brain functions, such as memory, understanding, judgement, language and thinking. It is recognised that people living with dementia are at an increased risk of physical health problems and become increasingly dependent on health and social care services - hence, dementia has a significant economic impact on the health care system and on the wider economy and society. The report illustrates that there is a significant gap between the expected number of people living with dementia and the number of diagnoses made in the UK with only 60 of the expected 122 people living with dementia per 1,000 people over 80 years of age have been formally diagnosed. Several barriers have been identified which may explain this gap, such as fear of the disease in the person or family, inability to separate dementia symptoms from normal ageing process, GPs lack of training and confidence in diagnosing dementia, unclear roles or inconsistent approaches of specialist services such as Memory Services, and variation and inconsistency in services. The progressive nature of dementia is associated with significant changes on daily living activities, behaviour, appetite and eating habits which may make people more susceptible to other diseases. This will be translated into multiple contacts with the National Health Service and social care services together with increased reliance on family, friends and health care services for support. The behavioural and psychological symptoms of people living with dementia, such as distress, agitation and anxiety, are particularly difficult for carers and are a common cause for people living with dementia to move into a care home setting. Dementia poses many challenges. Challenges to scientists, challenges to policy-makers, challenges to society. The answer must surely be human ingenuity and discovery. Paul Burstow MP Liberal Democrat Member of Parliament for Sutton and Cheam. The UK dementia challenge ahead Approximately 820,000 individuals in the UK (1.3% of the population) have a form of dementia and this is forecast to rise rapidly as the population ages. (Currently 163,000 new cases of dementia occur in England and Wales each year one case every 3.2 minutes) The Alzheimer s Research Trust estimates that 37% of all people living with dementia in the UK are in long-term care institutions, costing in excess of 9 billion per year in social care. Specialist training is key to providing good quality dementia care services but we believe that very few carers in the UK receive any form of specialist dementia care training. We also believe that less than half of UK care home residents living with dementia receive any form of dementia care funding. 4

7 Introducing the PEARL programme Four Seasons Health Care is one of the largest independent providers of care services in the UK. It owns and/or operates over 400 nursing and care homes and specialised care centres in England, Scotland, Northern Ireland, Jersey and Isle of Man. The Group cares for approximately 15,000 people at any one time and employs approximately 21,000 staff. With 190 care homes providing dementia care, the group had begun to make inroads into developing a Dementia Care Strategy, but the vision was to recognise dementia care as a specialist service and make this service available across all care homes. Four Seasons Health Care had already developed a specific dementia care manual by March 2006, began delivering two day Person Centred Care training and introduced Dementia Care Mapping (DCM) training to over 400 dementia champions - but there was no way of assessing if, or how that training made a difference in day-to-day practice. It therefore became apparent that Four Season Health Care needed to develop a specialist service with the ability to measure and recognise the level of success leading to the introduction of an accreditation award scheme for homes adopting the PEARL framework. Care homes needed to be able to measure the effects of training and ensure that the learning has transferred into every day practice. Homes needed to be measured against rigorous criteria, such as the ability to recognise and respond to the holistic needs of residents with dementia, the reduction of sedative drug use and measures to improve their quality of life. Creating and rolling out a specialist dementia care service required continuous focus and a dedicated dementia care team of seven was created, led by Dementia Services Director, Caroline Baker. The new PEARL Specialised Dementia Service and the pilot were officially launched in January Developing excellence in dementia care At the very heart of the PEARL programme is an holistic approach that engages all key influencers of a dementia resident s care experience, including relatives, friends, staff, community clinicians and GPs to help focus on the individualisation of each resident, the key themes of which can be found in Appendix 1. Four Seasons Health Care wanted to give the programme a name that reflected the essence of the programme s mission. The dementia care team utilised much of Christine Bryden s work and the idea of using the concept of the hidden PEARL within, that Christine Bryden talks about within her book Dancing with Dementia, the name was adapted by the programme to reflect its intent : Positively Enriching And enhancing Residents Lives. 5

8 The PEARL programme challenges theoretical recommendations and focuses on how to guarantee that all training is transferred into practice, placing specific focus on the importance of staff being able to recognise Dementia Care as a specialist area of practice and support them to develop their understanding and skills. 100 criteria were initially developed based on research and evidence based practice that were deemed crucial to enhance the care that the group provide for people with dementia. In her previous role within the PCT, Caroline Baker and her colleagues had developed a Benchmark for Person Centred Care to align with the Essence of Care Benchmarks (Baker et al) but this would not serve to measure the other crucial factors that contribute to Person Centred Care. Experience of working with Bradford Dementia Group and the initial criteria of the National Dementia strategy, incorporating AGE concern standards, NICE guidelines, the work of Christine Bryden, and the VIPS model from Dawn Brooker, former head of Bradford Dementia Group (to name but a few), all played a significant influence on the research and evidence based practice used to evolve and create the PEARL accreditation criteria. Once the accreditation criteria and bench marks were formed, 12 homes were selected at random to take part in the pilot. Putting PEARL into practice Developing a consistent quality of care across a large organisation: With 12 homes enrolled onto the pilot, each home manager was asked to identify, with their team, which elements of the criteria they met. Most homes provided balanced views in this self-assessment which helped the dementia team to tailor the level of support and resources accordingly and to formulate action plans for each home. A steering group was also established at the commencement of the project, led by Chief Executive Officer, Dr. Pete Calveley, supported by his Managing Directors for England, Scotland and Northern Ireland and each head of department relevant to the PEARL project. In addition to providing individual expertise, the steering group was instrumental in focusing and prioritising resources. Managers identified the areas that their homes needed to develop, along with timescales for completion. The Dementia Services Director then met with managers every six weeks to support, direct and chart progress and update remedial action needs. Managers also attended a network meeting every three months to share progress. This was a really helpful part of the process as Managers were able to exchange ideas and strategies as each team had chosen different priorities as their initial focus. 6

9 When a home felt it was ready to be validated two of the Dementia Development Team visited the home unannounced to carry out a two-day validation. This included talking to residents and families, Dementia Care Mapping (DCM) and a thorough review of medication, documentation and care plans. Once a home had reached the necessary status they were then recognised as a fully accredited specialist dementia care provider for the next 12 months, when they would be validated once again. A list of accredited homes and timescales can be found in Appendix 2 alongside those currently preparing for validation. Training is only the foundation The first stage of the approach was focused on the development of a dementia care manual and commencement of training staff in both Person Centred Care and DCM. The Group knew that although training is a crucial ingredient, on its own it was simply not enough. Four Seasons Health Care needed and wanted to be able to measure the effects of this training to be able to recognise when a home could be regarded as a specialist dementia care provider and when a home needed more support. Most importantly there needed to be a guarantee that training was transferred into practice in each care home. Section One of this report fully explores staff training which is at the very heart of the Four Seasons Health Care PEARL programme approach. This includes, but is not limited to, identifying how malignant social psychology plays a large role where the mindset of staff is generally that someone with dementia may be seen as disabled or dysfunctional. Life story work enables staff to understand the life of each resident prior to entering the home and how this may impact on their care within the home or their specific needs, as well as provide a focus for staff to engage in conversation. Not only does this enable staff to acknowledge what a resident does and doesn t like but to bring comfort or reduce anxieties based on previous experiences or existing fears. In addition to this, and unique to Four Seasons Health Care, is Resident Experience Training, where staff spend an entire day experiencing how it may feel to be a resident with dementia within a care home environment. The point of Resident Experience Training is to illustrate what it is like as an individual to have your choices and uniqueness disregarded for part of the day and then to have your uniqueness recognised and facilitated for the remainder of the day so that staff are able to reflect on both experiences and internalise the feelings that they felt in either situation. This is covered in more detail in section one and case studies can be found in Appendix 4. 7

10 Changing the culture Much of the success of the PEARL dementia service has been the effect it has had on the culture of staff thinking. Covered in detail in Section One in particular is the term Distress Reaction. This is a term Four Seasons Health Care has introduced as part of the PEARL program to re-define what the care industry as a whole terms challenging behaviour. The latter has long been recognised as a descriptor for residents who may hit out, shout or not engage in a conforming way. Four Seasons Health Care moved away from the term altogether as most incidents were found to be a reactive response to a distressing situation rather than behaviour. Person Centred Care training has changed the culture of care from providing care based on the point of view of what staff think a resident needs, to caring for a resident based on the needs of each and every individual. Alternative therapies and the environment Along with training staff, specialist dementia care requires specialist and alternative therapies as part of the day to day care of residents. Doll therapy, sensory rooms, music therapy, reminiscence therapy and portable memory boxes are all examples of therapies that have been introduced across homes as part of the PEARL programme with positive effects and results. One goal of effective, quality dementia care is to create an environment which balances stimulation, considers the impact of light, colour, contrast, texture, aroma and sound, assists in the identification of environmental features and the overall orientation of residents. The environment plays a significant role in enhancing the care of residents with dementia and enabling independent living. As part of the PEARL programme, Four Seasons Health Care has implemented numerous changes to the home environment for the residents with considerable benefit to residents and staff alike. The environment maximises the opportunities for residents to sustain their optimal levels of independent living and to engage in meaningful activity. Details and benefits of these changes are covered in more detail in Section Two. Concluding summary An accreditation process, measurement baselines, staff training programmes, the environment and surroundings are all crucial elements of a programme to guarantee specialist care for those living with dementia and are broken down in detail in this report, with case studies and statistics found in the appendices. The focus of improving dementia care commenced with the training of staff in both Person Centred Care and Dementia Care Mapping. There are now 500 trained dementia mappers across the group, with 2 qualified mappers in most PEARL homes, and approximately 5,000 members of staff trained in Person Centred Care. Training is an ongoing project and fundamental to the success of specialist dementia care. 8

11 A vast reduction in anti-psychotic medication (54% in Phase 1 and 42% in Phase 2), improved communication and weight increase in residents are just some of the areas where tangible improvements have been witnessed. In addition to this a new relationship between increased pain medication and the reduction of anti-psychotic drug use has been found. Importantly, staff feel more valued and motivated where dementia care is considered a specialist care role and that they have an important role to play as a care provider. The initial PEARL Project has just completed its first official phase successfully with thirty homes accredited and 30 new homes now being prepared for accreditation by the end of The pilot phase of the PEARL specialist dementia service has also received industry and government awards and widespread recognition as being a pioneering programme in the advancement of specialist dementia care. 9

12 Section One - Staff Training Primarily it is about learning about the things we don t realise we do and the negative impact this has on residents with dementia and changing our approach. Sharon Hall, Care Assistant Ashcroft Care Home. Staff working in care homes observe good practice and not so good practice, but how are they able to distinguish between the two? Care staff need to be empowered and have the confidence to put into practice what they have been educated as best practice. If care staff are questioned about their care standards and quality control, what professional literature or training can they quote or follow prior to the PEARL programme? Resident Experience Training - the power of learning through experience Resident experience training is a unique form of training, bespoke to the Four Seasons Health Care dementia training programme. The fundamentals of the training are founded in the concept of experiential learning and in particular ideas discussed in Introducing the Experiential Taxonomy (Steinaker & Bell, 1979) which are detailed in Appendix 3. The key is to enable care home staff to gain greater understanding and empathy of the needs of people with dementia by experiencing their world, which thus results in the internalisation and dissemination of training into practice. As we become more emotional and less cognitive, it s the way you talk to us, not what you say, that we will remember. We know the feeling, but don t know the plot. Your smile, your laugh and your touch are what we will connect with. Empathy heals. Just love us as we are. We re still here in emotion and spirit, if only you could find us. Christine Bryden,

13 Training takes a full day, broken into two distinct sections. Initially focus is on undermining personhood making use of multiple aspects of malignant social psychology (Kirkwood, 1997) so that participants experience something akin to what it feels like to not be treated as a person. In the morning, each staff member experiences aspects of sensory deprivation, in which both their vision and hearing are impaired. One arm is immobilised, and participants agree to wear a wet continence pad. Throughout the morning participants: - are not addressed directly or referred to by name - have no choice of food and are fed a little too quickly - have no chance to express an opinion or select a favoured activity - given beverages not to their taste, such as sugar in their tea when they don t take sugar - have tablets administered without warning - are moved without warning - are then taken to a bedroom to sit in a chair with the door closed until lunchtime At lunchtime participants are treated in a person-centred way, using information obtained from their life story work and personal history, and encouraged to take part in an activity of their choice. For instance, they are addressed directly and by name, and warned when any change or movement is about to occur. Following the training, staff are interviewed using a semi-structured questionnaire to provide qualitative judgements on their experience and the training itself. Participants are asked about their experiences as well as encouraged to articulate what they feel they have gained from the training. From the feedback it is clear that experiential training has real value and positively impacts care staff in helping them to understand and internalise how differently residents can experience life, depending on how they are thought of and treated. Since the pilot, a total of approximately 50 Four Seasons Health Care staff members have undergone Resident Experience Training to the end of Following the successful pilot of the resident experience training this training programme is now being rolled out across the homes by senior trainers. For the existing and ongoing PEARL homes additional training is being provided from March this year, with the target of two key staff in each PEARL home being fully trained. A more detailed case study on Resident Experience Training can be found in Appendix 4. 11

14 Malignant social psychology Prior to specific training on dementia care, the mindset of some staff tends to generally be that someone with dementia may be seen as disabled or dysfunctional. This then creates an environment where staff try to do everything for a resident - but this has the negative effect of disempowering a person and diminishing their levels of wellbeing. Helping staff to identify how malignant social psychology may have a detrimental effect on a resident allows for supportive social psychology training to guide staff in understanding that the things they do and say must help to support a person s uniqueness and not take away from this. Malignant social psychology forms an essential part of the early stages of Resident Experience Training, where a participants personhood is undermined by infantilisation and intimidation. This behaviour by a carer is usually not malicious or with any intent, but often rather a natural way of providing care without adequate training and support. Kitwood (Kitwood 1997) suggests people with dementia have difficulty increasing their own wellbeing after a period of prolonged disengagement. In terms of preventative action, avoiding periods of prolonged disengagement is thus central to a residents well being. Ultimately, helping promote the individuality and uniqueness of people with dementia improves their own sense of wellbeing and therefore crucially plays a central role in staff training and Person Centred Care. The PEARL Within - person-centred care & life story work Care managers and care coordinators should ensure that care plans are based on an assessment of the person with dementia s life history, social and family circumstance, and preferences, as well as their physical and mental health needs and current level of functioning and abilities. NICE guidelines for the management and coordination of care. Person centered care Beyond the clinical manifestations of each form of dementia, there is also a person whose uniqueness needs to be maintained, recognised and celebrated. Understanding the person within, through their life story is intrinsic to person-centred care and how this can impact on the quality of care. The term person-centred care was coined by Tom Kitwood whose powerful writing began to help people working with dementia to see the person behind the disease. According to Professor Dawn Brooker, Director of the University of Worcester Association for Dementia Studies there are four main elements to person-centred care referred to as VIPS: 12

15 - Valuing people with dementia and those who care for them - Treating people as Individuals - Looking at the world from the Perspective of the person with dementia - A positive Social environment in which the person living with dementia can experience relative well-being These elements are incorporated into Four Seasons Health Care s person-centred care training, policies and PEARL criteria. Firstly, it is important for carers and staff to understand the different types of dementia, and associated signs and symptoms. Person-centred care training covers the four main types of dementia: Alzheimer's Disease, Dementia with Lewy Bodies (DLB), Vascular Dementia (VaD), and Frontotemporal Dementia as well as mixed dementias. Person Centred Care can be as simple as addressing people by their actual name rather than darling or pet to knowing which toiletries a resident likes to use and what side their hair is normally parted on. Person Centre Care means we care for the resident as an individual and take what is important to them as a priority along with their values and beliefs. All medical and social care plans are then written about that person with this information playing a central role. Donna Mawhinney, Home Manager, Bangor Care Home. Life story work Working closely with the resident s family and engaging the family in life story work: the fears, comforts and preferred activities of each resident are easier to elicit and understand. Four Seasons Health Care encourage the residents and relatives to put the life story together and from this the care plan is formulated. A story board based on their life history outside their room also helps provide staff with talking points and a focus for communication. For example, a resident who keeps getting up early each morning and disturbing other residents may have in fact been a milkman for many years and enjoys this routine. So rather than being put back to bed, it would be preferable that they are kept busy and engaged in an activity. Another example could be a resident who is experiencing distress whilst taking a bath how can staff know if the resident is opposed to taking a bath or has a particularly strong fear of water due to a past experience without a full and detailed life story? Working with relatives and residents and understanding the life story of each resident helps care staff to appropriately engage with each person and manage each situation according to each individual person s needs. 13

16 Person-centred care and life story work ultimately promotes a holistic approach to care that upholds the personhood of the individual with dementia and maintains a resident s identity. To date over 5000 Four Seasons Health Care staff members have been trained in person-centred care. We have a resident who used to be a station master who tells us to all walk one way around the corridors and organises certain things for us like which way the chairs are facing. We now understand why he behaves like this. Another resident used to be a head teacher and from time to time will communicate with authority and tell everyone to sit down and listen. This is when she is back into her headmistress role and she tells us how to behave and points out etiquette and decorum - we respect this is her reality. Lynda Hodgkinson, Home Manager, Ashcroft Care Home. 14

17 Dementia Care Mapping - the residents perspective Dementia Care Mapping (DCM) is a tool designed to evaluate quality of care from the perspective of the person with dementia. DCM is a recommended practice by the National Institute for Health and Clinical Excellence, the Social Care Institute for Excellence, the Audit Commission and the Commission for Health Improvement as a method for improving care practice for people with dementia. The process of using DCM involves observing a number of residents over a period of time and recording information about their experience of care, including what they are doing (for example walking or talking), how they are responding to the experience, and any interaction they receive. This information is then analysed and interpreted, before being fed back to the staff and used to put together an action plan for change and improvements. DCM has also been used as a focus for staff training and development and as an aid to care planning since 2007, where Four Seasons Health Care provides three day training courses. Over 500 Four Seasons Health Care staff members have been trained in DCM to the end of 2009, ensuring that each care home has at least two qualified Dementia Care Mappers. With the Dementia Services Director licensed as one of 20 UK Approved DCM Trainers for Bradford Dementia Group training can be done in-house. DCM is a fantastic training aid for staff. Normally in meetings staff are told what they are doing wrong and so the feedback is actually negative. DCM illustrates to staff just how positive communication works and gives staff the ability to recognise what is right and wrong. In DCM you identify the small things that make a large difference and this process also train s staff in a positive way. Donna Mawhinney, PEARL Unit Manager, Bangor Care Home. Managers, Registered Nurses and Care staff are encouraged to attend DCM courses and spend three intensive days learning about Person Centred Care, how to code and assess levels of mood and engagement, how to analyse the data they have collected and how to present the information they have gained back to the staff so that jointly, an action plan can be agreed. Although the staff have found the course to be extremely challenging and were nervous about sitting an assessment, without exception, all have found the methodology and process very helpful in improving their knowledge of caring for a person living with dementia. 15

18 Staff Communication the power of effective communication The power of effective communication forms a major part of the training programme and the PEARL accreditation process. The way staff interact and communicate with each resident forms a major part of the quality of care provided to them. Staff hold the key to not alarming a person with dementia and possibly creating greater distress. Staff are trained to recognise each persons reality and to focus their communication on helping each resident through a time of distress or confusion and gradually enabling that resident to recognise where they are and what they are doing. To give an example, if a person with dementia is distressed about wanting to collect her children from school, rather than simply shocking that person into the reality that her children are already adults, staff should talk to the resident about her children, enabling the resident to recognise her reality independently (Validation approach). This focuses care staff efforts on trying to establish the underlying concern of the resident, and gradually helping her to acknowledge herself that her children are grown up. The importance of and use of communication skills for working with people with dementia and their carers; particular attention should be paid to pacing of communication and non-verbal communication. NICE Guidelines The challenge for carers is how to engage with a person living with dementia and what kind of communication they respond to most readily. Life Story Work enables carers to have conversation points to raise to ensure they are always engaging the resident. With the PEARL programme in place, the combination of a calmer environment coupled with a decrease in medication and the increase of activity and engagement with residents creates the opportunity for effective communication to play its key role in helping sustain a resident s well being and understanding. Resident Communication - distressed reaction or challenging behaviour? Distressed reaction is a term Four Seasons Health Care has introduced into the PEARL programme to re-define what most Primary Care Trusts and the care industry as whole term challenging behaviour. The latter has long been recognised as a descriptor for residents who may hit out, shout, urinate in the corridors, undress in the lounge or not engage in a conforming way. 16

19 An un-educated care provider may simply accept any unusual or challenging behaviour as an inevitable part of dementia. However, staff trained on the PEARL programme view such behaviour as a reaction that may possibly have been avoided if a different approach or recognition of a resident s anxiety or ill-being had been managed accordingly. If a person is uncomfortable or in pain, they are normally able to communicate this. However, a person with dementia may not be able to do so verbally or as easily. Staff therefore need to be trained and equipped to recognise a resident s body language and to use verbal and non verbal cues to establish the resident s need. Staff are also encouraged to become pro-active in recognising distressed reactions and perhaps more importantly the antecedent that may cause distress reactions to occur and how they may be prevented by using life story work and positive person work. What becomes very apparent when dementia is recognised as a specialist service is that most behaviours that occur are actually people with dementia trying to communicate something or becoming distressed by what was happening around them or to them - be that internally or externally. When Four Seasons Health Care started writing Dementia Care policies in 2006 initially the group began by using the term Complex Behaviour to try and describe this and to move away from the label of Challenging Behaviour however, this still did not appear to help remove the stigmatisation of such labels. While training staff, the group moved to use the term Distressed Behaviour and gave with it the groups rationale for moving away from the term Challenging Behaviour. A person who is pacing up and down the corridor or going into others rooms is not presenting staff with Challenging Behaviour Why are they distressed? What are they trying to look for? Who are they trying to look for? The pacing and possible subsequent agitation is a reaction to their distress for which staff have not been able to help with or recognise as yet. Caroline Baker, Dementia Services Director. One of the Care Assistants on the course challenged trainers and expressed that Four Seasons Health Care should be moving away from the term behaviour altogether as it was actually a reaction to an event rather than a behaviour. The dementia team agreed and reviewed the policies and procedures and the training packages that accompany them and our staff are now encouraged to discuss Distressed Reactions and why they may have occurred and what we may do to help the Resident in the future. 17

20 Four Seasons Health Care particularly liked the Newcastle Challenging Behaviour Model and the forms that they had produced and were given permission to use these as a basis for developing their own model. The form was adapted, mainly to change the terminology and also included some more analytical detail to help staff facilitate reflective practice regarding the resident to enable them to provide more detailed, person centred plans. Without exception, all staff who have been trained prefer the term and say that it helps them to think about what is happening for the resident and the skills that need to be employed to reduce the resident s distress. The main challenge now is that the term Distressed Reaction is adopted across the UK and embedded across the health care industry. Who will join us on our mission to adopt this new term? 18

21 Section Two - The Environment & Activities The quality of life of people living with dementia is expressed through their responses to their environment. One goal of effective, quality dementia care is to create an environment which balances stimulation, considers the impact of light, colour, contrast, texture, aroma and sound and assists in the identification of environmental features and the overall orientation of residents. The environment also maximises the opportunities for residents to sustain their optimal levels of independent living. Care managers should ensure that built environments are enabling and aid orientation. Specific, but not exclusive, attention should be paid to: lighting, colour schemes, floor coverings, assistive technology, signage, garden design, and the access to and safety of the external environment. NICE Guidelines. Common themes Themed corridors Themed corridors have been introduced in the majority of PEARL care homes. The more easily identifiable corridors are, the more easily residents are able to orientate within the care home itself. It also provides another environment with sensory stimulation. 19

22 Four Seasons Health Care have introduced items and pictures to the walls. A music corridor, for example, might have musical instruments, pictures of instruments and records on the wall. A gardening corridor would have gardening tools, plants and pictures. Some care homes on the coast, for example, have created images of seaside promenades or the local docks on their walls. Each care home is involved in deciding what theme(s) to use relating to their own environment and region in some homes residents are also involved in this process. Importantly the themes in each care home are decided through a collaborative process which includes residents, relatives and staff. Rest areas By providing seating throughout the home with items and magazines for residents to engage with, staff are able to encourage independent living knowing that rest areas have been introduced this allows residents to walk freely in their home and rest in other areas away from the communal lounge. Signage Words and symbols are crucial to assisting with resident orientation and ease of access to key areas. With independent living at the heart of the environment, clear signage reduces distress and enables a resident to move freely around the home. Colour coding Colour plays a crucial role in facilitating the everyday lives of people with dementia. Care homes have doors to rooms that are not for resident use such as storage rooms. These doors are now painted in a colour that blends in with the corridor to avoid resident confusion or attempted access, whereas rooms for residents use are clearly accessible in a different colour and marked with visual signage. Homes are encouraged to paint radiators a colour other than white, to ensure people do not mistake them for urinals. In addition, toilets are chosen in a colour that contrasts with the wall behind to enhance visual recognition. Red has been identified as a colour that registers with people with dementia, so toilet doors and seats were originally coloured red in line with recommended practice. However, this led to some distress with residents, some of whom strongly associate the colour red with blood or danger and would not want to use the facilities. Four Seasons Health Care toilet doors are now painted aqua green, clearly identifying them across all homes and toilet seats have been changed to a dark blue. Coloured crockery also helps people who are at risk of losing weight, as the food stands out against the background allowing residents to see it better. This also facilitates resident s independence. Following a study, initially blue crockery was used but it was found that certain food group/types did not look attractive against the blue background so the group now purchase the dignity range of crockery which includes a pale green and a bright yellow. 20

23 In one of our care homes, one lady always needed to be assisted with her food, even with verbal prompts she would not try to eat independently. When staff put her meal down on a coloured plate in front of her, she immediately picked up her cutlery and began to eat independently. Glass panel frosting Previously residents would often get distressed by seeing people through the glass panels in doors as they would perhaps call out to the person on the other side not realising they could not hear them particularly at the ends of corridors. These panels in doors have now been replaced with frosted glass or glass with images on it. Resident engagement & independent living The perception in the past has been that laying the table at meal times could not be done within a dementia care setting in a usual way. In the same way items not fixed to the wall or floor were viewed as dangerous because residents would move them. Involving residents in arranging their surroundings and laying the table in preparation for meal times has resulted in a calmer atmosphere with residents happier in their environment. If residents do move items around the home, staff accept this as part of the resident s active day and simply move it back later in the day when the resident has finished with it. Examples of engaging with residents and adapting the environment include providing those residents who prefer to walk around at meal times with snack boxes and finger foods to encourage and enable people to eat. This avoids trying to make people sit down when they don t want to and causing distress to all residents. It also helps with weight maintenance. Another example includes a lady who loved ironing. There were obvious concerns about potential burns, so the iron was adapted so that it would only get warm and not cause any burning. A number of homes also engage in providing a safe environment for cookery. Some homes have adapted areas of the home to be like a cafe where relatives and residents can share time together in an environment that feels different to the care home and also cook together. This can range from a sensory level of rolling dough through to cooking for those more able. 21

24 Activities & alternative therapies There is little high-quality research into the treatment of dementia with alternative therapies. However, there are various types of therapies that Four Seasons Health Care has introduced as part of the PEARL programme. Doll therapy Doll therapy is helpful, particularly for those experiencing loss or attachment issues. These do not necessarily have to revolve around a partner, relative or friend, but can relate to a home, a pet or any object of personal significance. 22

25 Four Seasons Health Care has available dolls that are weighted to resemble the feel of holding a real baby. It is important for staff to hold the doll themselves first and communicate with the resident about the doll rather than simply giving it to a resident. Carers are trained to handle the doll as if it were a baby, although not refer to it as such. This allows residents to make a choice about whether the doll is of benefit to them. The resident may take the doll from the carer and begin engaging or expressing themselves through the doll. If the resident does become attached to a doll and gives the doll a name, the staff are aware of the importance of continuing to use the chosen name for the doll. Doll Therapy is not a patronising tool but a method in which residents communicate and interact and is successful with both men and women and in particular those that are normally very withdrawn. One resident in particular would not come out of her room or communicate with anyone. When introduced to a doll in her room, she came out of her room with it and sat with it on her knee singing with a group in the care home for the first time since her arrival. More detailed case studies on the effects of doll therapy can be found in the Appendices. It can be challenging for people to understand the beneficial impact of interacting with a doll and carers tend to be cynical about the benefits of doll therapy until they witness its effect directly. The concept of doll therapy was introduced many years ago but it is only recently that doll therapy has been adopted more universally. There is now a wealth of publications within health care journals surrounding the benefits of doll therapy. Animal assisted therapy Interacting with the external environment has a visibly positive impact on residents and provides companionship, sensory stimulation and another communication method. Pet therapy with animals such as dogs, cats, rabbits, guinea pigs, even chickens, is popular with residents and more importantly it is beneficial. A number of Four Seasons care homes have introduced a pet that lives in the home. The residents enjoy interacting with the animals and having the companionship. In another therapy programme, the dementia care unit was visited by local zookeepers who came in with a number of large animals. When the husband of one of the residents visited his wife, he asked what she had been doing that day; she mentioned she had been playing with a llama and a donkey. Staff members had to reassure her husband that she was not in fact confused and was telling him the truth. Like any other type of therapeutic intervention, pet therapy takes the patient's likes and dislikes into account and is only used when carers are confident residents can benefit and be comfortable with an animal. 23