The aim of this assignment is to discuss how a social worker would assess the mental capacity of a service user who has been diagnosed with dementia. This essay will discuss the various meanings of the different types of dementia and how their mental health diagnosis affects an individual’s ability to make important decisions in their lives. This essay will discuss how the Person-Centred Dementia Care (VIPS) framework written by Tom Kitwood (1997) is able to guide the social worker in applying theoretical frameworks and also by applying Law and assessing the specific capacity of a person diagnosed with dementia. This assignment will also discuss how the citizenship, social and medical models differentiate in their understandings and meanings of dementia. When assessing capacity it is important to distinguish what type of capacity you are assessing. This could involve assessing decisions based on financial issues, housing situation, personal or domestic care needs, the ability to assess risk and safety, and also regarding their physical health care needs.
The social worker is able to apply the Mental Capacity Act 2005 to provide justification and guidance when assessing the service user’s mental capacity. The social worker will implement their professional judgement and accountability as well as work in a multidisciplinary manner and liaise with the GP, psychiatrist, neurologist, community psychiatric nurse or community mental health team. This would enable the social worker to obtain more evidence and reports in determining the mental capacity of the service user. The social worker will assess the mental capacity of a service user diagnosed with dementia through any form of assessment of need i.e. safeguarding needs, support needs, housing needs etc. It is also important to work in anti-discriminatory and anti-oppressive manner when working alongside service users.
The Alzheimer’s society (2010) found that diagnosable dementia occurs in 5% of those aged 65 years and over and in about a quarter of those aged 85 years. Of those with dementia, 50-60% will have Alzheimer’s disease and a further 10-15% a vascular or multi-infarct dementia. There are many forms of dementias, which include potentially reversible illnesses, such as alcohol-related dementia and those due to structural intracranial lesions. Dementia progresses as a very variable illness; in the early stages patients with dementia can continue to live at home with the support of family and friends. As the illness progresses, this support needs to be supplemented with targeted assistance to address aspects of daily living such as maintaining nutrition, self-care and compliance with medication.
Tom Kitwood (1997) was the first writer to use the term ‘personhood’ in relation to people with dementia. Kitwood (1997) defined ‘personhood as a standing status that is bestowed upon human beings, by others, in the context of relationship and social being, it implies recognition, respect and trust’ (Kitwood, 1997:16). The person-centred dementia care framework ‘brings together ideas and ways of working with the lived experience of people with dementia that emphasised communication and relationships.’ (Kitwood 1997 cited Brooker 2007:14).
The person-centred care involves four major elements, the first being ‘valuing people with dementia and those who care for them, promoting their citizenship rights and entitlements regardless of age or cognitive impairment’
Drake (1999:19) asserts;
‘Citizenship is more than consumerism, which is where the expression of power is limited to making choices or expressing preferences… it is about equality of opportunity and process although the outcome may be limited by the abilities of any individual.
There are many ways of understanding dementia which consist of the medical model, the social approach and the citizenship approach to dementia The citizenship approach to dementia is a new approach which concentrates on how people with dementia can help society in terms of political, and social rights, talking part in work, leisure, political debates and religious celebration. This approach is based on reciprocity, which is why this is a new development as nobody was thinking about the people diagnosed with dementia as being able to give as well as receive.
‘..dementia describes a group of symptoms which result from the destruction of brain cells. Although dementia is a physical illness, most of the symptoms and problems caused by the illness require psychiatric expertise and care.’ (Brotchie 2003 p. 2)
Dementia affects people’s ability to remember things for more than a few seconds, make sense of the world around them, cope with daily living tasks and express their feelings. Other factors which affect people with dementia are being able to think clearly and solve problems, make plans, unable cope with an over-stimulating environment and find it difficult to behave in a ‘normal’ way.
Dementia is one of the main conditions which are a result of mental confusion, memory loss, disorientation, intellectual impairment, or similar problems. (Mace et al 2006). Brotchie (2003) found that different people may suffer from different symptoms of dementia, depending on their personality and their illness which lead to dementia. Brotchie (2003) outlines four most common symptoms of dementia which are memory loss, changes in personality, difficulty in communicating and loss of practical skills. Memory loss is often a sign which occurs earlier and highlights something is not right, however could be mistaken for forgetfulness brought on my stress or feeling low in mood. A person with dementia may gradually forget where they are and how to get home; therefore emphasising there is a cognitive problem. People who may have dementia show changes in their personality as people struggle to function with a limited thinking capacity and over-react with everyday situations and daily tasks. People who are know to be calm may become aggressive or abusive, alternatively a person know to be reserved before they became ill may lose all social inhibitions.
‘Changes in people’s behaviour are caused by damage to the brain and are not something the person can control or prevent’. (Brotchie 2003 p.3)
This view of damage to the brain as a cause of dementia is supported by the medical model. The medical model concentrates on brain damage and state there evidence by its nature of becoming worse as time goes on. Jacques & Jackson (2000 p.4) emphasise the amount of; tibbs 2006 p16
‘..damage dementia does to the lives of sufferers and those around them. It poses an enormous challenge to health and social services and to the community as a whole.’
People diagnosed with dementia may struggle in making themselves understood e.g. forgetting the name of simple objects or familiar people. They may also find it difficult to make sense of what is being said to them as a result being unable to carry out instructions. People with dementia may forget things a few minutes after they have been told which is done by mistake and not intentional. Another symptom which may occur with a person who has dementia is having serious problems with carrying out simple tasks such as tying a shoe lace or doing up a zip, other tasks such as eating, dressing and washing become more difficult as the illness becomes worse. The majority forms of dementia are irreversible, there are limited treatments but the most help a person can get is from their family to plan for the best form of care in the future. It is vital for a doctor at this stage to be involved in the persons care and treatment (Brotchie 2003). Cantley and Bowe (2004) found that there can be other causes for these symptoms which may not be linked to dementia such as a general medical illness, drug toxicity or a life changing event.
In the more advanced stages of the illness dependence increases and there is often the need for residential or nursing care. Issues of capacity and consent are important at many stages of dementia and particularly affect financial issues, ability to assess risk and safety, and also decisions over physical healthcare (British Medical Association (2009). Marshall & Tibbs (2006) found that the Mental Capacity Act 2005, which followed the Adult with Incapacity Act 2000, means that we are more able to offer protection in law to adults who lack mental capacity, including people diagnosed with dementia. A major change to this law emphasised that ‘presumption against lack of capacity’, which means a person is now presumed to be capable of making their own decisions until proved otherwise.
The second element from the person-centred framework consists of ‘treating people as individuals taking into consideration their unique personality, physical and mental health, social and economic resources and that these will affect their response to neurological impairment’ (Brooker 2007:12). Marshall & Tibbs (2006), have argued that this involves the presence or absence of Mental Capacity, which can be determined by two questions in order for the service user to have the capacity to make the decision they should ‘be able to comprehend and retain the information which is material to the decision, especially as to the consequences of making or not making the decision in question’. It is important for the social worker to take this into consideration when assessing a person capacity and making a professional judgment. The service user should also ‘be able to use the information and weigh it up as part of the process of arriving at a decision’ (Marshall & Tibbs 2006:34). The social worker should take into consideration that an individual may retain capacity to make certain decisions such as, the choice of what to eat but, lack the capacity to make serious decisions such as managing their finances i.e. paying bills.
According to the British medical association (2009) all adults are assumed to have mental capacity unless there is evidence to prove this is not the case. There are many factors which can affect a person’s capacity temporarily, such as dehydration, infection, medication or fatigue however assumptions about impairment cannot be based on age alone or frailty. It is important for the assessor to talk with the person when they are at their best taking in to consideration any physical problems which could affect their cognitive ability.
‘A wide spectrum of ability is found in people deemed to have impaired competence, including those living with dementia or with learning disabilities. It is important, therefore, to see each person as an individual. Disease or other factors can result in temporary, fluctuating or enduring incapacity.’ British Medical Association (2009:34).
There are issues which need to be addressed before a person is assessed to have capacity or not such as, behavioural or cultural differences which are not indicators of impaired cognition. On the other hand, decisions which come across as being ‘rash’ or ‘unconventional’ are not indictors of impaired cognition either but can lead to the process of a formal assessment.
It can become clear by talking to a person with dementia if they have sufficient mental capacity to make particular decisions; however, if this is not clear a GP or psychiatrist are often the best professionals to give a view, especially if the person has had previous contact with them. It is vital to understand in these circumstances an assessment cannot be rushed and time should be taken in looking at the person medical history and the decision for which the person is being assessed. An individuals’ appearance and behaviour needs to be taken into account e.g. if they suffer from a mood disorder or a mental illness. If a person has suffered from damage to the brain, such as a stroke, this can make verbal communication near impossible however it is not necessarily an indicator of reduced mental capacity. Similarly, long term memory loss is not an indicator of reduced mental capacity however being unable to retain information long enough to make a decision would invalidate it. British Medical Association (2009).
If a person has to make a serious decision and there is still doubt about their mental capacity it would be advised for a formal assessment to be completed. If a person lacks capacity it is usually possible to assess their ability through conversation, but if they refuse assessment, it cannot proceed unless required by court. If it is clear a person lacks mental capacity and they haven’t given their consent decisions on their behalf are governed by the Mental Capacity Act 2005.
According to Brown & Barber (2008), the Mental Capacity Act 2005 begins, in Section 1, by emphasising five key principles to be followed whenever working within this framework of the Act. These are to work with the person with dementia with the assumption that they have capacity unless it is proved otherwise, not to treat the person as unable to make decision unless all the steps to help them to do so have been unsuccessful. The third principle of the Mental Capacity Act 2005 emphasises not to treat a person as ‘unable’ to make decisions for themselves just because the person may make an unwise decision and a decision made, under this Act, on the behalf of a person who lacks capacity must be done, or made, their ‘best interest’. The final key principle of the Act is:
‘Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action’ Brown & Barber (2008:5-6).
The third element of the person-centred approach is ‘looking at the world from the perspective of the person with dementia, recognising that each person’s experience has its own psychological validity, that people with dementia act from this perspective and that empathy with this perspective has its own therapeutic potential’ (Brooker 2007:63). The assessment process will consist of many areas that should consider their environment, such as their home and finances ‘many individuals with early dementia retain the capacity to complete an enduring power of attorney which at a later date can be registered’ (Brooker 2007:67). The Mental Capacity Act 2005 includes the ‘Lasting Powers of Attorney’ (section 9-12 and 22-23). A Lasting Power of Attorney in section 9 (1) as:
‘a power of attorney under which the donor (‘P’) confers on the done (or donees) authority to make decisions about all or any of the following-
P’s personal welfare or specified matters concerning P’s personal welfare, and
P’s property and affairs or specified matters concerning P’s property and affairs, and which includes authority to make such decisions in circumstances where P no longer has capacity.’ (Brown & Barber 2008:41).
The social worker will also assess safety and risk. Marshall & Tibbs (2008:44) argue ‘as dementia progresses the risk of self neglect, exploitation and wandering may determine a person’s ability to live alone, while risks posed to other from driving and misuse of gas appliances may cause great concern still’. In this situation the level of this would be too high for that person to continue to live within their home environment due to health and safety reasons. This may result in the use of the Mental Health Act 1983 for the purpose of permanent residential accommodation or 24 hour care by family members or carers.
The Mental Capacity Act 2005, Section 2 refers to the ‘diagnostic test’ which is narrowed down to the ‘functional test’ in order to identify the smallest area of decision-making to apply for the incapacity test. Further in the Act, Section 3 provides the test which should be used to determine a person’s mental capacity on a particular decision e.g. refusal of medication. The Section 3 test is to establish whether a person is able to understand information relevant to the decision and if they are able to retain to information. The person is also tested of their abilities to use or weight that information as part of the process of making the decision or if they can communicate effectively regarding the decision (by talking, using sign language, or any other way) Brown & Barber (2008).
According to the Mental Capacity Act 2005, anyone involved in the care or support of a person could have a say in the capacity assessment, which would usually include, family members, health and social care workers, but most importantly doctors, psychiatrist and psychologists assessments would be crucial. Typically the people who are responsible to carry out capacity assessments are nurse practitioners, social workers, doctors and neuropsychologists (Halton Council 2008).
There five key principles of the mental capacity act 2005 have to be considered if a professional is to do an assessment with a person diagnosed with dementia. It is important that the social worker begins with the assumption that the person has capacity. It is also important for the social worker to understand a person’s appearance or diagnosis is not a sign of a lack of capacity, therefore highlighting the need to document accurate information for considering that a person may not have capacity in relation to a specific decision. The social worker has to consider mental capacity issues throughout the assessment as they would risk and safeguarding issues, noting the specific areas which raise concern. The Mental Capacity Act 2005, Code of Practice states:
‘Where assessments of capacity relate to day-to-day decisions and caring actions,
no formal assessment procedures or recorded documentation will be required’.
The Mental Capacity Act 2005, Code of Practice, gives guidance on when there is a need for a clearly documented assessment. This is where a decision which needs to be made has major consequences, such as a decision to change accommodation or a decision to accept or decline support at home. Another reason for a clearly documented assessment may be if there is a ‘dispute with the person, their family or the care team, as to the capacity of the individual’. The person who may need the assessment may be subject to challenge therefore requiring an assessment for capacity or ‘there may be legal consequences of finding capacity’. (Davies 2008:9) One main reason for a person to have an assessment for capacity is to reduce the risk the person poses to themselves in terms of preventable suffering or damage (Davies 2008). Not all of these circumstances are exact and require professional judgement and ongoing supervision. Davies (2008) explains in some circumstances the capacity for an individual may be related to a specific decision at a specific point in time therefore, the need for an on-going assessment for capacity may be required.
Brown and Barber (2008) discuss the concept ‘best interests’ in regards to the Mental Capacity Act 2005. The Act 2005 states that one crucial principle is that if a decision is made for or, on the behalf of someone else who lacks capacity must be done, or made in that person’s ‘best interest’. This principle applies to anyone who is carrying out the responsibility for making the decision such as a family member, paid worker or carer, an attorney, a court-appointed deputy or health professionals. Brown and Barber (2008) assert the need for people who have the responsibility for making other peoples decisions, being familiar with the Act’s new requirements for the checklist approach. The Mental Capacity Act 2005 new checklist approach is set out to contain common factors which should be measured on every occasion a decision is to be made. The Law Commission (1995, para 3.28)
‘First, a checklist must not unduly burden any decision-maker or encourage unnecessary intervention; secondly it must not be applied too rigidly and should leave room for all considerations relevant to the particular case; thirdly, it should be confined to major points, so that it can adapt to changing views and attitudes.’
A person who has the responsibility to make decisions on the behalf of someone who ‘lacks capacity’ should consider the following steps to ensure the best interest of that person. These steps are to firstly encourage participation, which is for the person making the decision to do their utmost to encourage and support the person with dementia to take part in making the decision, secondly identify all relevant circumstances, this is to try include all the things the person who lacks capacity would usually take into consideration if they were making the decision themselves. Thirdly, find out the person’s views who ‘lacks capacity’ such as their past, present wishes and feelings, any beliefs and values, and any other factors which the person would usually consider. An important factor is to avoid discrimination and not make statements about a person best interest because of their age, appearance or diagnosis. It is necessary to consider whether the person might regain capacity, if so can the decision wait until then? Finally, the person making the decision should consider if the decision concerns life-sustaining treatment, and should not make assumptions about how the person should or shouldn’t live (Falconer 2007). The Mental Capacity Act 2005 also include consulting others an a key aspect of considering how a person ‘best interest’ could be meet effectively. If it is appropriate to do so, discuss with other people for their opinions about the persons best interest, as they may have information about the person wishes and feelings. The Mental Capacity Act 2005 state the people that should be consulted are:
‘anyone previously named by the person as someone to be consulted on either the decision in question or no similar issues, anyone engaged in caring for the person, close relative, friends or others who take an interest in the person’s welfare, any attorney, and any deputy appointed by the Court of Protection to make decisions for the person’.
(Brown and Barber 2008:34)
If the decision is for an important medical treatment and there is no one to confer with then an Independent Mental Capacity Advocate (IMCA) must be consulted. In safeguarding concerns if a person is deemed to have no capacity involving a specific type of risk and decisions, and family members are deemed inappropriate, it is essential that a IMCA is involved in important safeguarding investigations in providing best interest decisions for the individual.
The Independent Mental Capacity (IMCA) Service was a late initiative to the Mental Capacity Act 2005, and has been available since October 2007. Section 35 of the Mental Capacity Act 2005 highlights the main purpose of IMCA , which is to support and stand for the person concerned, to establish their wishes and feelings and to monitor that the Acts principles and the checklist are being met.
The Mental Capacity Act 2005, highlights that a decision-maker does more than making a decision on someone behalf who lacks capacity, but also ensures the persons human rights are met. The Mental Health Act 1983 has a process whereby they are able to detain people who are mentally disordered which in specific circumstances would be an appropriate response, however the Mental Capacity Act 2005 have a different approach seeing restraint as ‘deprivation of liberty’. When a person is said to ‘lack capacity’ it is difficult for them to decide about being in a particular place and is in effect deprived of their liberty, and there are several options which could be taken:
‘scale down the level of restrictions to what would be seen as a restriction of movement rather than a deprivation of liberty’
‘arrange an assessment under the Mental Health Act with a view to using its powers’
‘make an application to the Court of Protection to make a personal welfare decisions’
‘follow the new ‘Bournewood’ procedure
‘consider short-term or emergency use of common law powers’.
(Brown & Barber 2008 p.39)
The ‘Bournewood Judgement’ involved an NHS trust to remove an autistic man unable to speak and limited understanding from a day centre to an in-patient unit without his consent. In ‘2004, the European Court of Human Rights upheld the families view that detention under the Common Law of an incapable patient using the best interest argument was unlawful because it was too arbitrary’ (Marshall & Tibbs 2006:43). If people are to be deprived of their liberty, there must be some lawful justification and some safeguards. ‘For patients with mental illness, use of mental health legislation should be considered if the patients meet the statutory requirements. The ‘Bournwood Judgment’ marked a significant step forwards in the recognition of the rights of incompetent individuals’ (British Medical Association 2009:87). It also enforced to the empowerment and rights of older people with impaired capacity.
The fourth element of person-centred care ‘is proving a supportive social environment, recognising that all human life is grounded in relationships and that people with dementia need an enriched social environment which both compensates for their impairment and fosters opportunities for personal growth’ (Brooker 2007:83). This is view of considering the social environment of a person with dementia is supported by the social model as it is based upon a person environment and social circumstance, considering dementia as an ‘impairment’ which results in a person becoming unable to function as a ‘normal’ person. This is a positive outlook on dementia as it can adopt a rehabilitation approach allowing chance for change and making the experience of dementia a better one, whereas, on the other hand the medical model which argues otherwise which is often a pessimistic view. Marshall & Tibbs (2006) book expands the concepts of rehabilitation to include teamwork, working with families, prostheses, removing causes of excess disability, learning motivation and focusing on what the main problem is which needs to be addressed.
Whilst working with older people social workers must remember to work in an anti-discriminatory and anti-oppressive manner at all stages, such as, an assessment, planning and intervention. The person-centred framework enables a social worker who works alongside people diagnosed with dementia to understand there medical conditions and to provide a package of care at a deeper level and to provide them with many opportunities in leading a valued and fulfilling life.
These standards are underpinned by values and ethics that must support the development and delivery of practice. These include a social worker demonstrating respect for an individual, maintaining trust and maintaining confidentiality. Other values consist of understanding and making use of strategies to challenge discrimination, disadvantage and other forms of inequality and injustice (Crawford & Walker 2009). Butler & Lewis (1973 p.30) argue:
‘Ageism can be seen as a process of systematic stereotyping of and discrimination against people because they are old, just as racism and sexism accomplish this for skin colour and gender’.
Crawford & Walker (2009) argue that ‘working with in older people may include people who are vulnerable, who may be oppressed and disadvantaged however, each person is individual and have their process of getting older’ (Crawford & Walker, 2009:34) therefore it is important to treat each person individually. Whilst working with older people it is essential to consider a whole range of issues such as demonstrating awareness of the legal, policy, and political context of the work being completed, combined with an in-depth understanding of the experiences of that older person in their specific situation. The social worker must be attentive to potentially abusive situations, whilst at the same time working in a multidisciplinary manner with other relevant professionals and organisations. Social workers must work towards developing a holistic approach to assist their practice in working with older people as it allows them to take into account the persons situation in society and the values and ethics of social work.
Overall the main principle to assess a person diagnosed with dementia is to remember to assume the person has capacity if proved otherwise. Once an assessment is completed and the appropriate professionals are consulted and it is deemed that the person is deemed to lack capacity then it is vital to work towards the person best interest ensuring them of their human rights. This is done by using the checklist approach ensuring all the factors are covered before a decision is made. The person who has the responsibility for make the decision on someone behalf could be a professional, family relative, Power of Attorney or an Independent Mental Capacity Advocate. All these issues must be considered whilst working with someone who lacks capacity. It is crucial when assessing and determining a person’s mental capacity to take into consideration all aspects of the person’s life, health and important decisions that require to be made. It is also essential that the social worker has to take into consideration that a mental capacity is based on a specific aspect of a persons capacity for example managing finances, housing etc.
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