Dementia is most commonly misunderstood and misrepresented in terms of what it is and what actually causes it and most importantly who it affects. The Royal College of Physicians (2005) relatively defines Dementia as:
“the global impairment of higher cortical functions including memory, the capacity to solve the problems of day-to-day living, the performance of learned perceptuomotor skills, the correct use of social skills and the control of emotional reactions, in the absence of gross clouding of consciousness (i.e. drowsiness and the lack of alertness in the person). The condition is often irreversible and progressive”.
Drawing on observations in all the health and all the social care settings, Kitwood ( 1997) suggested that people with Dementia were frequently denied personhood, mainly because of ‘ malignant social psychology’ in layman’s terms the negative attitudes and unhelpful behaviours of professional staff . Carers (Recognition and Services) Act ,1995 defines carer as: ‘someone who provides a substantial level of care on a regular basis’ people who are under a contract of employment are excluded.
Carers for people with Dementia advocate for the development of person centered care which is one of the key ideas of the new culture of dementia care, which was formulated by the now deceased Tom Kitwood and the Bradford Dementia group and professionals as well as researchers who used and disseminated Kitwood’s work.
The idea of person centered care is helpful.” It reinforces the PERSON and not the illness and when we consider the stigma associated with a diagnosis of dementia and how the person can become invisible this concept is a very good way of redressing th is balance. It is felt that a person centered/relationship centered approach to care will help to promote social
Inclusion we felt that it was also necessary to consider within the context of Relationship centered care It encourages people caring for people with Dementia, such as staff in residential homes to find out about the whole Person, their life history, likes and dislikes etc. which will then improve the Care given to the person with dementia, and also make caring for them easier.
It is a well recognised fact that Carers play a significant role in providing Support to people with dementia. Quite often this support is unpaid or contracted out with people frequently providing in excess of 50 hours per week with almost half of those providing such high levels of care being over 60 years of age. It is identified in the New Dementia Strategy (2009)that “family carers are often old and frail themselves and have high levels of carer burden, depression and Physical illness, and decreased quality of life”. Family carers need specific Emotional and practical support.
Many family carers find the diagnosis of dementia traumatic. Where the family are the main carers, they must be offered a comprehensive Carer’s Assessment.
As we all grow older, there is always the inkling of wonder about the illness of dementia, we have all witnessed it by either seeing our friends and family and neighbors somehow exhibiting some form and symptoms of the Dementia illness, and we just wonder if they are sufferers?. As a psychiatric nurse i often become involved in the lives of carers of people with Dementia usualy when a change or a crisis occurs, involving either the person cared for or the carer which by then the family find it hard to manage by themselves. I have come to realise that the carers often give up many of their outside interests rearrange or reorganize the home or even getting some neighbours for an hour or two to provide a sitting service for them to catch up with sleep and other necessary chores. This type of contribution from the carer I have come to acknowledge and to see it as recourses which have made me see the carer of a person with dementia in a different light.
The support and care for older people with mental health needs as well as their carers had become the gradual responsibility of a constellation of statutory agencies in as much as volutantary organisation s and the independent companies. Research suggests there has been a cultural change in the role of the carer. Carers don’t choose to become carers: it just happens and they have to get on with it; if they did not do it, who would and what Would happen to the person they care for. In my current working Environment I have come across “The Essex, Strategy for Dementia 2011- 2014 which is based on national guidance set out in living well with dementia: A National Dementia Strategy,2009 (NDS), the subsequent Department of Health Quality Outcomes for people with Dementia and the NICE Quality Standard for Dementia The purpose of the Strategy is to provide an overarching statement of how the Objectives are met.
With the new concepts and new statutes coming out for the Carers of people with Dementia I decided to under take a review on the Impact on Carers for caring for a person with Dementia as this is still a forgotten issue. I am hoping to empower myself with the information gathered to get a better understanding and insight into my named topic and also to determine if this is a Burden to the carer or it is simply an impact to the carer.
There used to be sparce information on the role of the carer, but now there is an abundance of literature to support. With a better understanding of the subject topic I am hoping to share my findings with my colleagues and carers that might benefit from the little I may have gathered.
Dementia is most commonly misunderstood in terms of what it is, who is affected and what the causes is. Definitions of Dementia have become more precise and to the point in the last twenty years or so, the current diagnostic criteria for Dementia mainly refer to the multiple cognitive and intellectual deficiencies.
The term Dementia which derives from the Latin word “Demes” which translates into English as out of one’s mind .This is commonly used as though there was only one illness or disease.( ).
Dementia describes signs and symptoms that transpire when the brain is affected by a number of specific diseases and conditions.
According to the definition given in the revised version of the International Classification Of Diseases (WHO 2010) ‘Dementia is a syndrome due to disease of the brain, usually of a chronic or progressive nature’ further explained as an acquired and usually irreversible disorder which is commonly regarded as a disease of the old age of 65 years plus. This highlights that most of the research has concentrated on elderly sufferers possibly to the detriment of the younger suffers and their careers.
In 2006 the Alzheimer’s Society commissioned the London School of Economics and the Institute of Psychiatry at King’s College London to produce a report on dementia in the UK. The research team was commissioned to provide the most up-to-date evaluation of the
numbers of people with dementia in the UK, projections on numbers of people in the future and to explain the financial cost of dementia
Health and social policy makers need accurate estimates of the numbers of people who currently have dementia and those who will develop it in the future in order to plan the services needed to support them.
The research that underpins this report has used a methodology known as the Expert Delphi Consensus to produce the best possible estimates using currently available research data. Dilip V et al 92010)
Ten leading UK and European experts systematically reviewed the evidence base and reached a consensus that: The prevalence of both young onset and late onset dementia increases with age, doubling with every five-year increase across the age range. The prevalence of young onset dementia (under 65 years old) was adjudged to be higher in men than in women for those aged 50–65, while late onset dementia was considered to be marginally more prevalent in women than in men.
Alzheimer’s disease was considered to be the dominant subtype, particularly among older people, and in women. Frontotemporal dementia was considered to account for a substantial proportion of young onset cases among younger men.
The report estimates that there are 11,392 people from black and minority ethnic groups with dementia. It is noteworthy that 6.1% of all people with dementia among Black and minority ethnic (BME) groups are young onset, compared with only 2.2% for the UK population as a whole, reflecting the younger age profile of BME communities.
The prevalence of dementia among people in institutions varied little by age or gender, increasing from 55.6% among those aged 65–69 to 64.8% in those aged 95 and over.
The consensus group also generated estimates of the prevalence of dementia among all those aged 65 years and over living in EMI (elderly mentally infirm) homes (79.9%), nursing homes (66.9%) and residential care homes (52.2%).
The proportion of deaths attributable to dementia increases steadily from 2% at age 65 to a peak of 18% at age 85–89 in men, and from 1% at age 65 to a peak of 23% at age 85–89 in women. Overall, 10% of deaths in men over 65 years, and 15% of deaths in women over 65 years may be attributable to dementia. Annually, 59,685 deaths among the over 65s might have been averted if dementia were not present in the population. The majority of these deaths occurred among those aged 80–95 years. Delaying the onset of dementia by five years would halve the number of UK deaths due to dementia to 30,000 a year.
It is estimated that there are now 683,597 people with dementia in the United Kingdom. This represents one person in every 88 (1.1%) of the entire UK population. For simplicity the Alzheimer’s Society(2001) will be using the figure 700,000 for people with dementia in the UK in public messages.
The total number of people with dementia in the UK is forecast to increase to 940,110 by 2021 and 1,735,087 by 2051, an increase of 38% over the next 15 years and 154% over the next 45 years”. ( DEMENTIA UK 2011)
The prevalence and incidence of Dementia is currently continuing to rise, according to the Department of Health’s statistics brought up in the new Dementia strategy of 2009 shows that both incident and prevalence of Dementia continue to rise in a linear manner among the patients who are over 65 years. Age continues to be the most important risk factor for dementia and it needs to be further understood of the role it plays for effective preventative an therapeutic plans and strategies to be put in place for future development. There are about 700 000 people with dementia in the UK. Dementia has a big effect on our society; there are at least 15,000 people under 65 who have the illness. The number of people with dementia in minority ethnic groups is about 15,000 but this figure will rise as populations get older. Dementia makes the lives of people who have it, and the lives of their families and carers, very difficult. Department of Health (2009).
The Role of the carer is rarely chosen ,it is often thrust upon individuals as a consequence of a sudden illness, disability or accident of a family member .
A carer is someone who provides unpaid care by looking after someone else who can either be a family member or a relative, or maybe a friend who is either ill or frail or possibly have a disability. (CarersUK 2011)
Carers save the economy ?87 billion per year an average of 315,260 per Carers Many people who are carers do not necessarily recognise themselves as carers. They are parents, children, partners, friends or neighbours doing what needs to be done to maintain the quality of life for those that they are looking after. They may not realise that support is available to them in their caring role. It is vital that carers are identified and supported.
Carers provide unpaid care and support, involving, for example, personal care (washing, bathing, dressing, feeding,) cooking, shopping, housework and giving emotional support.
Carers have the right to an assessment of their needs and may be able to get extra help and financial support. They can discuss this with a member of staff who can signpost them appropriately to the social work team.
Carers should have the opportunity to be involved whatever their age, gender, sexuality, disability or religion. Many children are carers and should be acknowledged as such. The important part is recognising and valuing carers as partners in the well-being and recovery of the patient. Their involvement is important, not least because of the emotional bond between carers and the people they care for. Good information enables carers to become partners in the provision of care and supports them in best helping the person they care for.
Carers are an important people in our society. Most health and Community care is provided by family, friends, and relatives.
Statistics from the Charity Carers UK indicate that 1 in 8 adults are cares, which is about six million people in retrospect of the United Kingdom population. It is also estimated that by the year 2037 it’s anticipated that the number of carers will increase to 9 million. Every day another 6000 people take on the caring responsibility. The latest figures on carers are from the 2011 census, this indicates that the 6 million carers are actually 10% of the total population and approximately this is 12% of the adult population. The 2001 census showed that women are more likely to be carers than men, across the UK the number of female carers totals 58% than man 42% Census Carers UK( 2001).
Carers have achieved agreat deal in the last 15 years and it is essential that these gains are not lost or traded away in any new legal or policy initiative. One way which has been identified to charter these achievements is to plot them against the evolutionary scale pronounced by Twigg & Artkin 1994.
It is argued that the NHS and Community Care (1990) treated carers as a resourse valued only in terms of their ability to provide support , the act made no refernce to the rights for carers, relying instead opn the rhetoric of the guidance to deliver the message that they were valued.
There are many impacts of caring for a person with Dementia, these vary from financial costs as caring can be significant, health, the impact of caring can be detrimental to the health of carers.
The 2011 Census took place on 27 March 2011. Statistics obtained from a Census improve the understanding of people’s needs. Government and local Authorities in England and Wales depend on this information to help ensure that citizens get the services they need in their community. Scotland had a separate census, which will also took place on 27 March 2011.
The ONS distributed questionnaires in March to around 25 million households. The survey covered questions ranging from information about work, health, national identity, citizenship, ethnic background, education, second homes, language, marital status and so on. Carers needed to fill the Census 2011forms as it also inquired about carers and cared for. All information provided was kept in strictest confidence and only to be used to produce statistics. The answers were to be turned into statistics used to build a picture of today’s society. It was deemed simple If the census could not see you, the organizations’ responsible for delivering the services you need would not be able to see you either.
Some legislation have been achieved as a successful campaigning by numerous local and national organizations, such as the work and families act 2006, this act gave carers the right to request flexible working times from their employer this came into effect around 2.65million carers. On 3rd of February 2009 the government published Living well with Dementia, a new national Dementia strategy which sets out to plan for action that should benefit the half a million carers looking after someone.
The National Carers Strategy published in June 2008 and sets out a ten year vision for government and public bodies.
Carers like everyone else in the UK are entitled to rely on the protection of the Human Rights Act 1998.
The Government’s National Strategy – Caring about Carers published in 1999 (http:www.dh.gov.uk/en/Publicationsandstatistics) requires organisations to ensure inclusion of the carer as well as the individual patient or service user as partners and to give them real choices and control over the range, nature and timing of services.
In June 2007, the DoH announced the introduction of a ‘New Deal for Carers’. This programme of work was a commitment in the DoH’s 2006 White Paper ‘Our Health, Our Care,Our Say’ . It includes proposals for a revision of the Prime Minister’s 1999 Carers Strategy, setting up: a help and advice telephone line; provision of cover in emergencies; and an expert carers’ programme. The UCLH Carers’ Policy has taken this new programe into account.
A core principle of The NHS Plan (2000) states “The NHS will shape its services around the needs and preferences of individual patients, their families and their carers”.
The Carers and Disabled Children Act (2000) means that carers have the right to be consulted about their willingness and / or ability to provide or continue to provide care for another person. ‘Being Open (National Patient Safety Agency (NPSA) initiative, 2005) set out the obligation for trusts to be open and honest when communicating with patients and carers about the causes of any unexpected harm that resulted from the treatment and care of patients. The National Service Framework (NSF) for Older People (2001) standards set out the importance of information for carers. ‘Consent – A Guide for Relatives and Carers’ (2001) states that friends and relatives cannot make decisions on behalf of patients who cannot decide for themselves. Even so they may be able to tell health professionals about the person’s opinions and beliefs, for example if they have strong views about particular health conditions or treatments. In the case of children and young people, parents/guardians are able to consent for their children. However children and young people are also able to consent for themselves if they are deemed competent and capable of informed decision making. Please see the UCLH Consent Policy and Procedure for further guidance to staff on this issue.
The Mental Capacity Act 2005 allows a person to use a LPA (Lasting Powers of Attorney) to appoint someone to act on their behalf if they should lose capacity in the future. This is like the Enduring Power of Attorney (EPA), but the Act expanded this to allow people to let an attorney make health and welfare decisions. The Mental Capacity Act 2005 took effect from April 2007.
The Act provides a statutory framework to empower and protect patients who have made Advance Decisions commonly known as Living Wills. Please refer to the UCLH Policy on Advance Decisions (Living Wills) about Treatment and Care for guidance to staff on this issue The Carers Equal Opportunities Act (2004) promotes the health and welfare Of carers and states all carers’ needs should be assessed by their local council taking into account the carers’ wishes to work or undertake any education, training or leisure activities.
Impact/Burden of Caring
When caring roles have become well established their impact on the lives of carers and their family can be very significant.
Most carer identify that caring had impacted negatively on their health and wellbeing ,mainly focusing on some reporting having suffered from a range of illness including Arthritis, high blood pressure, diabetes, chronic fatigue/fibromyalgia and IBS exacerbated by their caring role (carers Scotland 2011) Almost half the carers interviewed reported that their condition had started after they began caring .
The 2001 Census findings found out that those caring for 50 hours a week or more are twice likely to be in poor health as those not caring 21% against 11%.
Income and finances continue to be a factor in affecting carers health and wellbeing. Other factors contributing to poor health amongst carers are low incomes and lack of breaks. Giving and receiving care is an essential part of each person’s humanity crucial for the well being of the overall society fabric, often you see carers feel unsupported with their needs unrecognized and their contribution taken for granted.(Stiell et al 2006)
According to research by Carers Uk Finacial costs of caring can be significant .72% of carers wee found to be worse off financially as a result of becoming carers. The reasons cited for this include the additional costs of disability, giving up work to care , the inadequacy of disability benefits and the charges for services
Once a diagnosis has been established and appropriate medical treatment initiated, more long term patterns of care may need to be considered. Any form of intervention needs to be guided by an understanding of what dementia is. (British journal of medical psychology, 1998). More in general the impact of caring for a person with Dementia is highlighted by a few more aspects mainly the change in behaviour presenting challenging behaviours,loss of recognition of people, loss of the person also known as the living bereavement, spouses often become labelled as carers when they wish to be seen as husband or wife leading to the loss of identity. One of the biggest impacts is the loss of freedom and flexibility to have a life because the constant role of looking after someone and limiting what you can do and where you can go. There is also the lack of understanding by society as a whole.
The goal of good dementia care should be to improve people’s sense of well being the inner resources available to them and to lift their quality of life just as valid a set of therapeutic aims as cure. Because the giving of care is often seen as a matter of common sense, rather than as a complex, sophisticated and subtle process, there is a high use of unpaid carers. The diversity of this network is illustrated by the cost estimates for dementias in the UK ranging from ?1 billion to over ?14 billion per year ( Bosanquet & colleagues 1998). If we are to transform quality of life we need to empower service users and their carers to make choices about what they want and enabling them to care for themselves and putting them and their carers at the heart of planning .
What about the impact?
The impact that is experienced or needed will vary over the course of the illness and from person to person and family to family. The most common areas the carers would need assistance with would be a key person to contact when help is needed. Empathetic understanding of the problems for both the person with dementia and the carer. A chance for the family carer to understand the experience of the person with dementia, which helps them to cope better.
Quite often situations affecting the carers and even the person with dementia raise ethical problems such as issues around truth telling and reality orientation how to respond to things such as the person in their 80s who belives their parents are still alive.
Peoples understanding of dementia from family to family are different Regardless of the ethnic, cultural or social group they belong to. However we have identified a number of concerns regarding how different groups understand dementia and access services People from BME groups are often more reluctant to approach services for help/support and diagnosis The understanding of dementia as an illness is variable amongst different communities and cultures some view it as something to be ashamed of and hidden. The common misconception amongst professional teams about BME families and communities “looking after their own” The lack of culturally appropriate services. This ranges from carers in the home to carers in care homes Some Admiral nurses have noticed that some cultural groups are reluctant to accept respite services; this could be linked to the lack of culturally appropriate services. Nurses identified that some assessment tools used to assess dementia are not culturally appropriate.
The use of interpreters for assessment is problematic, a number of nurses spoke about the difficulties involved in assessing a client using an interpreter. The Nurses questioned the training of the interpreters used and wondered about levels of awareness of the importance of even slight differences in the way they interpreted answers could make.
Studies used and research methods(general)
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