Identifying and understanding the needs of Alzheimer’s sufferers from the age of 65 and over around Thurrock County
According to the ‘Alzheimer’s Society’, in UK we have around 850,000 people with dementia, and 670,000 family and friends acting as carers. Chances to develop dementia are increasing significantly with age, one in 14 people over 65 years of age, and one in six people over 80, has dementia, and is more common amongst women than men. Currently, dementia costs UK economy £23 billion a year, a figure that is estimated to grow by 2018 to £27 billion. However, as stated in the last report published by the Alzheimer’s Society, the ‘spend is often not being deployed effectively and is not delivering good outcomes for people with dementia and carers’, (Lakey et al). The care offered to people with dementia to often fall short of best practice, thus dementia sufferers and their carers fail to access recommended care in a well-timed manner. However when they do access the services the care they get is fragmented and poorly coordinated, as a result the care they get is not ideal, the outcomes are poor and costs are greater.
The aim of my research project is to have a better understanding of Alzheimer’s disease and to identify the needs of the sufferers from the age of 65 and over around Thurrock County.
By the end of this research project, I will:
- understand Alzheimer’s disease;
- study what causes Alzheimer’s disease in elderly people;
- find ways to diagnose the disease earlier;
- try to find ways on how to make sure that appropriate care is accessible to the dementia sufferers and their carers.
- how to improve the quality of life for people living with the condition;
- find out if there is a cure for dementia?
- recommend the best way of living with Alzheimer disease.
According to Polit and Beck (2008), a literature review can be defined as ‘a critical summary of research on a topic of interest, often prepared to put a research problem in context.’
As stated in the article ‘About dementia’ from ‘Charity UK 2015’, ‘Dementia is a global concern nowadays and is more likely to be seen in wealthy countries, where people have a longer live expectancy
However, because the type of research I chose to do, which is a secondary type of research and in order to demonstrate the rationale behind it, I will conduct a literature review in order to evaluate and clarify the final research. Therefore I will undertake a review of materials which has been already published, online articles, blogs, PDF formats, et al., alongside reading the printed word from books retrieved from the college library or my local one; all this will enable my research to be linked to concrete theories in order to reassure its accuracy. This will be done by narrowing a summary for each reading and develop its theory, based on the patterns they make. These readings will be very significant and effective to the research as it acts as evidence as well as furthers explanation for the theories concluded.
The first step into a proper understanding of dementia I have got from ‘The dementia guide’ published by the Alzheimer’s Society, first published in 2013 and last reviewed 2016. A guide which has taught me how to help people living well after diagnosis. It also educated me to:
- get a better understanding on dementia, symptoms, causes and why do some people get the disease;
- treatments, drugs or non-drugs treatments, the treatment ;
- key points about how to live with dementia;
- how to plan ahead after you are diagnosed with the disease;
- services available for people with dementia;
- support for the carers;
- and last but not least how to influence dementia research.
Other sources available which I used are the electronic searches of database such as the:
- PubMed journals with a great selection of updated articles, which will give me a better insight into the sensitivity and the burden carried, of those living with the disease.
- World Health Organisation journals briefing about the international public health.
- NHS which was providing me with all kind of information’s in regard with the questions I had about the diagnosis or symptoms of dementia, the treatments available and the risk factors for the development of the disease.
- CD’s provided by the Day Centre I do my practice with, which taught me that caring for individuals means to put them at the centre of our care, however they taught me that a Person Centred Approach is vital in our day to day practice.
Oneof the reasons to do a research about dementia is the connection I have with the place where I do my practice and the desire to help and understand our clients at my best. Another reason is to participate in a small manner to the global fight for a world without the Alzheimer’s disease. Reading ‘Still Alice’ by Lisa Genova has inspired me greatly to take interest in the topic of dementia, as it shows perspective into the life of someone who deals with it. The book which is also a major motion picture that won many awards, shows the emotional turmoil of having someone you care for, deal with something that is beyond their control and affects everyone around them as remembering key points, highlights and basic information becomes a struggle. This was an inspiration story that led me to want to make patient’s life easier the best way I can, and learn about it as much as I can as it was fascinating.
When we speak about research methodology, we likewise use the terms of primary research, secondary research, qualitative and quantitative, which refer to the way our research is carried out and the methods we’ve been using. I chose to carry out a secondary type of research about Alzheimer disease. In the beginningI will use mixed methods assessment to investigate the individualities, variety of outcomes, the barriers and the facilitators for any involvement which are harmonising the physical, psychological and social care for the people which are struggling with the condition. My evaluation will involve a variety of sectors, like the public and mental health, social care, local authority, et al. In order to meet my aim of getting more information and have a better understanding of dementia I began with a self-administered questionnaire which I emailed to the Day-Centre were I usually do my practice, along with some information about my intentions. I believe this was a good idea in order to get some answers and to assure our clients diagnosed with dementia that they are not alone and we do everything in our power to help them to understand and live with their condition.
Ethics are seen in research as the governing rule of good or bad practice. Research ethics involve responsibility. As I conduct my research I’m responsible to not invade anyone (who takes part in the research) privacy unnecessarily, without specific direction, or permission. Is very important to keep in mind that what may be acceptable for one person might be very delicate and of a more difficult nature for another person. Likewise a lack of thought about their feelings can be seen also as an unethical manner to approach them in the research problem. Blaxter et al. (2001) advise that this is a common cause of ethical challenge At the end of the day participants are doing me a favour therefore they have to be treated with respect, I have to promote equality at all times and to not discriminate against them for any reason. However as a student carrying out a research for the first time, my work will be more beneficial for myself then for others, thus I have to think carefully about the way to deal with the participants. It is also very important to gain permissions prior to any research being carried out. When carrying out a research in a large establishment a written consent has to be given by the management of the place, permission which needs to be arranged well in advance, as a result time management and prior planning is very important. And again as a student we need a written confirmation from our tutor to specify that we are legitimate to carry out that research. From the perspective of an individual, participants to a research are putting their trust in the researcher, therefore the information we get need to be used in a prior agreed manner. They will feel more confident to share information when their anonymity is retained and some of the information they give are confidential. Ethics within dementia is challenging because of the nature of the disease threatening the rationality and independence of an individual and is raising specific questions about their quality of life. Due to the ageing population, the revolution of Health and Social Care in many countries will generate conflicts for physicians and other providers, thus the vulnerable and frail elderly will be considered of low priority. As we can see, issues in ethics can arise when there is conflict about human values in a particularly social context, as well as conflicting opinions about what is considered a good life. When providing care and support for people with dementia, ethical problems are faced on a daily basis, like the balancing of freedom and safety, deciding the best interest for the individual with dementia, balancing sometimes the needs of the person with the disease in conflict with the needs of the others who are also deserving consideration.
Thorough research is producing a considerable amount of information. The Data Protection Act highlights the distinction between anonymity and confidentiality. Data which is held anonymously cannot be linked to an individual participant in any type of research thus they need to be given the proper information. Data protection laws are applicable only in regard to personal data where the disclosing consent has not been given. However when storing confidential data all participants need to be informed about how long it will be retained, who is having access to it and the right to withdraw at any time but also the right to get their data explained to them at any time. Informed consent in regard of how personal data will be used in the future is very important in data protection law and applies only when consent has not been given to disclose, thus does not apply to anonymous data and is relevant to data sharing, for ex. UK data Archive.
A completed and returned questionnaire indicates that the participants have given their consent already, however most of these forms are normally anonymously. Research practices require a precise attention in the process of getting the consent forms, therefore two original copies have to be produced and participants have to be prior informed so that they can make informed decisions about their participation, involvement or withdraw at any time. It is very important that consent forms contain the names and status of all researchers. Confidentiality has to cover all the information received from participants recorded in data sheets or computer media. The Data Protection Act (1998) was updated under the terms of Freedom of Information Act (2000), hence this will include any personal information in written form, as in written paper records stored in files , all related to the research.
A common problem in conducting my research will be time management. However I will try to start early and devote my time from now on to do my work and to be well prepared for the time when we have to hand in. Some of the reasons which can hold me back, I can explain as to be:
- Poor time management
- Difficulties in finding the proper books;
- Overwhelmed by the scale of the task
- Loss of motivation
- Difficulty concentrating
- Personal problems
- Feeling under pressure
But, an early identification and prevention will help me to minimise any negative effects encountered on the way. As soon I will come across problems I will try to review what I’m expecting of myself and check if my expectancy is realistic.
In order to improve the prospect of a timely completion and to avoid any barriers, I will try to be as realistic as I can about the time to start and conduct my research, to dedicate time to plan and revise the initial plan, to take into account any other things that can arise and interfere with my plans, to focus on one thing at the time and have clear in my mind the objectives I can achieve on a regular basis, thus to leave enough time for editing and correcting my work.
|2 December||Write the research proposal||Literature review||Literature review||Some data collection|
|30 March||Complete the data collection||Analyse data||Analyse data||Write the dissertation plan and begin first draft|
|17 July||Complete current work||Complete current work||Complete work||Hand in work|
From the findings and the proposed improvements, it will benefit people living with the condition and their carers. A better understanding in the detection of the causes which are preceding the development of the disease, will prepare patients to understand their condition.
Unit 6 Part 2
The need to understand dementia
Understanding dementia (third edition)
The attitudes to dementia change gradually and more importance is put now on how the ways in which the dementia sufferers can be involved in the decisions taken in regard to their own care and how to share the first experiences of the early stages. ‘Understanding Dementia’, by Jacques A. and Jackson G., (2000), Highlights the basic needs to understand dementia, and is centred on how it affects the individual’s brain and how those involved are responding to the disease process. One of the main purposes of this book is to indicate the characteristic pattern of the signs and symptoms in dementia. Despite everything was said, and according to them, the basic general signs or symptoms of decline are roughly the same and in other words it can be defined as a syndrome. Thus, thinking this way, research has been stimulated and inspired attempts for treatment, helping to make dementia respectable. According to their studies, they draw the conclusion that dementia crises cannot be avoided, however the most important tasks faced by profession and voluntary organisations dealing with the dementia sufferers, are to ‘shift the focus away from crisis management on to managing the slow decline’. This move is shown to be achieved as soon as early referrals are made, proper diagnosis and assessments seen as worthwhile efforts by professionals and general practitioners are made, taking into account the multiple problems in need of multiple solutions for dementia. First described by Alois Alzheimer in 1907, the pattern of the disease and the population structure was very different from the one today. At that time the ratio between Britain and other similar countries for the population aged over 65 was around 5% to over 15% today. However this book is concluding that the tasks we face now is to spread widely the knowledge of all the different forms of care and to make sure that they are made available to all the dementia sufferers across the world.
The need to understand Alzheimer’s disease and other Dementias
Dr Nori Graham, an emeritus consultant in the Psychiatry of Old Age, acting as the National Chairman of the Alzheimer’s Society for England between 1987 and 1994 and as an umbrella organisation of all Alzheimer’s associates worldwide from 1996 to 2002, a co-author to the book Understanding Alzheimer’s Disease & Other Dementias, tries to give supplementary advice in this book for the patients that wish to understand more about their condition. How future developments will change the outlook for people with dementia, however in other words, to describe how the human brain works. According to her ‘there needs to be more training and research into management of dementia, not involving drugs with their often unpleasant side effects. For example, use of life histories and greater emphasis on looking at behaviours in context may well help reduce reliance on drugs.’ While there is still not an immediate vision of any cure, new diagnostic techniques and treatments are in the development process. This will have to continue for many years to ensure that any new drug treatment will be safe to use before becoming widely available.
To tell or not to tell- is ‘Tha’t the Question’? They need to know choose
Malcom Goldsmith (1996) a researcher for the Dementia Services Development Centre, was appointed to do a research founded by the Joseph Rowntree Foundation, aiming to improve the services for people with dementia and their carer’s, following the increasing awareness to the significant surge in the number of people with dementia. At the Dementia Services Development centre, they were aware of a few people with dementia who were telling what they felt, thus the conviction that there were some techniques such as using the arts, psychotherapy and group work by which they can tap into the experience of the dementia sufferers, and this understandings will help to improve the practice. In October 1993, they submitted a project to the Joseph Rowntree Foundation, claiming that ‘in order to improve services for people with dementia and to make them more responsive to their individual wishes, it is necessary first to accept that people with dementia have a voice that is worth listening to, second to facilitate the use of it and third to hear it.’
In his book ‘Hearing the Voice of People with Dementia’, Goldsmith states that ‘this book does not have the answers: it asks the questions, shares views and experiences and should generate further work to debate’. His research points out that ‘there is still a long way until we can be confident we know how to hear the voice of people with dementia’. However, the book is seen as a major contribution in changing the culture of dementia care and to ensure that ‘the dementia sufferers will begin to take their place as users of services with views of value to contribute to their nature and quality.’
One of the ten points raised in this book, bringing more discussions and disagreements than any others, ‘To tell or not to Tell’, is exploring the way to handle the thorny question, how to explore the reality of dementia with the people who suffer from it with honesty and integrity when they were not allowed to discuss the illness? One of the inspectors reply was that: ‘People felt that this was vital. They were particularly critical of GPs who will not share the diagnosis. Until they are not told early they cannot plan together what they want to do’.
Whereas a specialist in old age psychiatry remarked that: ‘As with all these loaded terms you need to be sure of your facts when you use them. You need to be clear whose needs you are addressing and you need to have the resources available to provide the back-up if sharing a difficult diagnosis in full, seems to be what is required. To some extent you can make it possible for people to ask and know as much as they wish to ask and know’.
Various opinions, however in summary carers and service providers tended to prefer an early diagnosis despite the fact the medical profession tend to be more cautious and reluctant to commit itself. One of the conclusions following this study was that an early, accurate diagnosis is of benefit. In the vision of a patient services manager: ‘they should be told, but very rarely are in my experience. We as professionals fall down very badly in this area. It is one that we definitely need to address.’ Another unit manager reflected that, the ‘fear of the unknown is often harder to deal with than needing to come to terms with the truth and knowing what to expect of self and others’. We can see that the general view is that, to be told the truth is more beneficial than to be kept in the dark about your condition and there is little or no written argument that sustain that people should not be told, unless there is a specific reason.
As stated by Goldsmith (1996) in this book, ‘at the end is just a matter of the importance of telling versus the importance of withholding, than it is of making a right judgement and an appropriate response. Is a matter of balance and we are in a transition period when the emphasis is shifting from protective withholding to responsible sharing.’
Using the Three Golden Rules, (Contented Dementia Trust) when caring for a dementia sufferer will not be to productive in the beginning, however in time if used by all the people around them the benefits will appear quickly and everyone’s life will be much easier. With the name of SPECAL sense, is used widely when caring for people with dementia, an understanding of the disease that helps with the confidence of the carers to build a personalised Special Care Profile. When we:
Don’t ask too many questions
Avoiding to ask too many questions will save them the unnecessary distress or potential drama in the process of looking for the necessary information that are not stored in their album.
Listen to the expert (the person with dementia) and learn from them
For them most of the time feelings are more important than facts, thus the information or answers given to them should mostly generate good feelings to them. We are obliged to them to avoid leaving them with anxieties that they cannot explain. SPECAL sense is the best answer that, when used constantly will give them the confidence all round.
Is very important to follow them instead expecting that they are following us, to elude disturbing the sense they make and start were they are.
The SPECAL method is proposing a lifeline to anyone diagnosed with dementia and those that are caring for them.
Need for help, Answers at your fingertips;
Reviews of previous editions ‘Alzheimer’s and other Dementias: Answers at your fingertips, by: Cayton H., et al, (2008), stated that in this book: ‘The authors, all of whom have a thorough understanding of dementia, have addressed almost every issue which could crop up in a day-to-day caring situation and provided well-judged and practical answers’.
According to Neil Hunt this book: ‘For carers and families, this book provides a fount of knowledge and experience that will be invaluable on the journey through dementia. Its comprehensiveness and clarity ensure it is accessible and excellent value’.
With many years of experience in looking after people with dementia, helping their families and carers, the authors of this book, understand the difficulties someone in this case could face but also can advise how to find solutions for the problems faced.
To get help in case you have dementia or you care for someone caring the disease is not always easy. A wide range of information and advice, services and support is available, however is recognised that to get thru to those organisations and agencies, is very difficult.
‘Answer at your fingertips’, advise that they are three main important contacts, the person with dementia’s GP, the local Social Services and the Alzheimer’s Society. However, many organisations or people, professionals or volunteers can help or advice, many courses, opportunities for family carers to learn about dementia or how to care for someone who has it. Some branches of the Alzheimer’s Society or local carer’s groups run practical sessions on topics, such as the safety aspects or difficult behaviour. Support groups for people with dementia, where they met regularly to talk about their feelings, exchange tips of how to handle memory loss, or even to go out together, will help them to get out of their isolation, socialise, live an independent live.
Spiritual life can be very helpful, most of them are retaining their spiritual dimensions intact, despite the disease, thus is a good idea to maintain those spiritual needs. Affecting three people in one hundred, over the age of 65, dementia is seen to increase its number, due to earlier and better diagnosis but also due to the fact that people live longer, reaching an age when the risk to develop dementia is increasing.
The need to be treated
Concerns over recent years about the use of antipsychotics to treat the behavioural and psychological symptoms of dementia
It is well known that dementia is not a natural part of ageing, thus forgetfulness comes with older age or during the times of illness and stress. Caused by the diseases of the brain, often called a collection of symptoms, including memory loss, mood swings, communication problems or reasoning, therefore is not just about losing memory. The aspect we have in our mind about dementia is very bleak, however people diagnosed with dementia continue to drive, hold satisfying jobs, socialise, in one word to have an active and healthy lifestyle. The disease is making it harder for those affected to do certain things, but getting the right knowledge and support will help dementia sufferers to get the very best out of their life. Sadly, we know that currently there is no cure for dementia, however drugs or no-drug treatment can lessen a person’s symptoms for a while.
As stated in the article “National dementia strategy for England”, ‘Concerns over recent years about the use of antipsychotics to treat the behavioural and psychological symptoms of dementia’, (2012), over recent years, concerns about using antipsychotics has increased concerns, because they are associated with the risks of cerebrovascular adverse events and a larger mortality rate.
However with the exception of risperidone, no antipsychotic is licensed in the UK for the treatment of BPSD, even if they are frequently prescribed off-label. One of the reports which is at the base of the first national dementia strategy for England, (National dementia strategy for England, 2009) the Banerjee Report has concluded that the use of antipsychotics in elderly people with dementia was too high, and its associated risks were outweighing the benefits. According to the Banerjee Report, these drugs seem to have a very limited positive effect in the management of dementia symptoms. One of the other results of these report was that these drugs were used to often as a first line, rather than as a second-line treatment, after the previous ones failed. Thus by November 2011, in accordance with these findings the government promised a reduction in the use of antipsychotics for the people suffering from dementia. Lately we can see a decrease in the prescription of the drugs for elderly people with dementia. However, the NHS Information Centre is in the process to carry out a national survey, a very important step to start the changes within practices.
The third edition (2000), Understanding dementia’, by Jacques A., states that now for the first time in UK, donepezil, rivastigmine and tacrine are licensed for the treatment of the Alzheimer’s disease. However according to them, is still too early to say what kind of effects they will have on the sufferers of Alzheimer’s, thus there is no doubt that some patients were showing significant improvements in cognitive function. Regrettably, they don’t affect the underlying progress of the disease, they just put the cognitive functioning back to the previous six months, and only with some patients and therefore so many health authorities are remaining unconvinced of the benefits for using them and at the same time writing prescriptions remains restricted.
results with the delivery of a care that became more person-centred. The following outcomes are results of its success: strong leadership, increased ration of qualified staff, and more crucially a culture that encourages change and communication.
The need for Independence
The need for independence, can be a challenge for dementia sufferers, dementia sufferers are gradually losing their independence and are becoming more reliant to get support and care from the others around them. Seen as a hard challenge this can be very distressful for everyone involved, therefore it is very important that, if possible the family, friends and carers should support as much as they can the person in need to do things for themselves rather than ‘taking over’. This is seen as a contribution to maintain their dignity, confidence and self –esteem and to not feel worthless or helpless. However in most of this cases conflict can arise when the dementia sufferer may resist help, not accepting that, things have become more difficult to handle. Thus the importance to involve them as much as possible, allowing them to do things their own way, trying to maintain a balance between the independence and any safety concerns. Understanding how they may think or feel is very important as this is affecting the way they behave. A big help will be if the carer that is offering support will try to see things from the same perspective with the sufferer. Carers are experiencing their own emotions, therefore is essential that everyone involved is encouraged to express their feelings. As dementia sufferers are experiencing changes in their emotional responses, with less control over their feelings and how to express themselves, they become more irritable, prone to mood changes or overreacting, sometimes they appear distant or uninterested. Thus the importance to look behind words or behaviours, to see the feelings the person may want to express. Sometimes strong emotions are caused by unmet needs. Insecurity will make them to lose confidence in themselves and their abilities, not being treated the same as others, as a result of their diagnosis has a strong impact on their self-esteem.
They need to be active
Keeping Busy is a practical book, written by R. Dowling, an expert in activities and dementia care, is rich in compassion in regard to those impaired, offering guidance and the skills needed to offer a few moments of joy to dementia sufferers.
As Alzheimer disease and many other related disorders remain chronic diseases, diseases which cannot be cured and we can’t do much to stop the devastating impact they have on the sufferers life, therapeutic activities programs that minimise the behavioural damage, and withstand as long as possible the keys to personhood, are restoring their sense of purpose, control and identity, helping them to feel good about themselves and to enjoy other people. A vast number of books and articles are describing the principles underlying good activity care for dementia sufferers, however this principles are not enough, Jim Dowling in his book ‘Keeping busy’, shows what to do and how. He explains and describes in detail the activities and how to implement them, simple activities which are not requiring expensive or complicated supplies, but work as a team, and integrating activities into all phases of care.
Live Story Work
The need to communicate
As individuals we shaped by our life experiences and this helps other people to understand the kind of person we are. “Life Story Work” is an activity in which the person with dementia is supported by staff and family, dedicated to give those people the opportunity and the ability to express themselves and communicate aspects of their identity through communication. Dementia is a hurdle to people, as it causes memory loss and communication flaws. Therefore, Life Story Work is committed to create a community in which people can start to build their personal biography through reviewing their past life and events with the support of relatives and staff. This activity brings them together with their family members and staff by sharing stories and personal experiences. Furthermore, this agenda places significance on the use of visual images being bought ‘to life’ in order to empathise the realism of the stories as well as being updated and edited according to preferences. According to Mills and Chapman(1992), ‘Many of us who work with confused elderly people would agree that our knowledge about their past live , as opposed to the diagnosis and progress of their illness, is inclined to be somewhat sparse if these patients are seen as the sum total of their problems then the outlook is bleak. We need to see the person behind the dementia. (p. 27)’
As stated by a consultant psychiatrist, who wrote that he was quite‘, appalled by the lack of personal knowledge about some old people with dementia in residential and nursing homes’, a point made by Faith Gibson (1991) to:
‘Staff have acknowledged their abysmal ignorance of the person as a person in terms of knowledge about their past history. To say that little more was known about some of these people in care that was known about Jewish refugee children fleeing from the Nazi Holocaust who arrived in Britain with only a label around their necks, is only a slight exaggeration. Despite all the rhetoric about admission policies, admission practices are still all too often grossly inadequate especially when it comes to detailed knowledge about the person’s past.’ (p.10)
Murphy (1994), advises against the assumption that in every case of life story, we must see a physical end product, not as a task to be achieved but as a process to be valued. The most important think is what the person wants to share, even if at that moment in time we don’t understand it, we have to take it on trust or on hold until we will have a better understanding of it.
Overall, Life Story Works has proved to have significantly successful
The need to develop excellent care for the Alzheimer’s sufferers.
Widelyacknowledgedthat so many of the Alzheimer’s sufferers live and die in care homes were the quality of life is an international concern amplified time and time by media, (whatsoever television or newspapers), ‘Developing Excellent Care for People Living with Dementia in Care Homes’, (2014) is presenting a more optimistic yet reachable picture of the potential to live well in a care home. This book provides the alternative optimistic sight ‘of living a good life until you die in a care home’, not only describing how to put person-centred care in practice but also how it can be achieved and rooted into day-to-day practice.
Developing Excellent Care for People Living with Dementia in Care Homes is an overviews of the tried-and-tested strategies, used to achieve a sustainable change in practice, a book that recognise the need for organisation to support a person centred approach. Caroline Baker the author is an expert in the real word delivery of person centred approach for people with dementia, herself working in a large care home chain and facing all kind of challenges. It is well-timed to get the expertise of someone that worked for so many years to recognise and introduce the best strategies for people with dementia and their families. In her view person centred care ‘is the only way forward- there is no way back-and we have seen how rich the outcomes of this approach can be: residents who feel happy and well cared for and who are, as much as possible, able to manage their own destiny, in contrast to residents that ,ay feel anxious, vulnerable and alone’. From simple questions of how we put person-centred care in practice now?, to how we Value people? And how we apply an individualised approach?, to deliver person centred care should be natural and very simple to deliver.
Evidently, there are occasions when ‘best interest’ decisions have to be taken (Mental Capacity Act 2005), however if the service users’ needs and wishes are met, this can be considered a winning formula.
The need of help the wellbeing off carers
Relatives, friends, neighbours that are caring for someone with dementia, can feel frustrated and stressed at times, therefore they can get help from various organisations that can provide respite care at home, through home care agencies or the local authority. Sometimes, care away can confuse the sufferer, thus the need to visit beforehand, in order to check that all the needs of the person with dementia are meet. Information’s and support for how to care for dementia sufferers are available calling the Carers Direct helpline on 03001231053, reading well Books on Prescription for dementia, GP-s and other health professionals can recommend titles, available at the local libraries.
Need for research
Alzheimer’s Society’s Care for today and cure for tomorrow research programme is a clear evidence for their growing commitment for research, increasing the investment in new researches by at least £10 million per year by 2017and will continuebeyond this date. Care for today and cure for tomorrow is aiming to increase the understanding causes of dementia to motivate advances of prevention, diagnosis and treatment, to improve the support and care that is provided to people affected by dementia.
The task of Alzheimer’s society is to diminish the impact of dementia on lives today and generate a world without dementia tomorrow, the funding research into what causing, cure care and prevention of dementia. They are dedicated to defeating dementia through research. The only charity in UK that is funding research for dementia.
The UK Dementia Research Institute reveals on the 20 of April 2017, its first research programmes across six centres across the country: University of Cambridge, Cardiff University, The University of Edinburgh, Imperial College London and the King’s College London.
Using state-of-art research, the program of the foundation will expand the traditional view of neurodegenerative disease as the disorder of the misfolded proteins, considering the proteins in the complex environment of the brain. The institute expects to revive the discovery pipeline for dementia drugs, investigating new molecular and cellular mechanisms for the neurodegenerative brain disease. The Institute researchers are trying to discover ways to manipulate the brain’s natural defence mechanism and the role of metabolism, sleep and bacteria in the gut, which are all taking part in determining the likelihood for the individual to develop dementia.
According to Dr Doug Brown, the Director of Research and Development at Alzheimer’s Society:
‘’Dementia is set to be the 21st century’s biggest killer and is devastating the lives of hundreds of thousands of people. With no treatments to slow, stop or prevent dementia, the UK DRI could not come at a better time. The institute provides a dynamic, collaborative and fresh approach which will transform dementia research and will deliver life changing discoveries for people affected by dementia. Its incredible exciting to see its first pioneering research programmes take shape across the six centres.’’
‘’Alzheimer’s Society has committed £50 m to fund new research at the institute, maximising the impact will have on people with dementia today and in the future. With the first foundation research programme now in place, we have the right ingredients for innovative discovery research that will rejuvenate the dementia treatment pipeline.’’
However, in UK dementia is costing the economy £26.3 billion, but less than £ 74 million was spent by the government and charities on research in 2013. (Alzheimer’s Society, 2015)
A general review made by them, of the dementia research workforce, marked serious gaps in the measures to retain or attract researchers. There is also a serious lack of people from the clinical and care professions that focus on the dementia research.
‘By attracting and retaining more of the very best researchers in dementia, we will be able to significantly speed up progress towards innovative care and that all-important cure. Alzheimer’s Society is leading the way to address this challenge. We have recently invested over £6,5 million to support 75 individuals to develop their carers in dementia research and intend to do much more in the years two come’’. (Dr. Doug Brown, 2017)
- Alzheimer’s Disease International, The Global Voice on Dementia, available at: https://www.alz.co.uk/research/statistics, accessed on: 05/12/2016
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