The greatest challenge is the current lack of a gold standard. This includes religious beliefs, personal attitudes towards life-prolonging treatment and cultural expectations that decisions will be taken by the healthcare team. Capacity is particularly relevant in the context of Power of Attorney (PoA), Guardianship, voting, contracts, wills, marriage and criminal responsibility [1–3]. For those who have already lost capacity, the courts can appoint an appropriate adult to manage decision making. . A PoA allows an individual to appoint a chosen person(s) to make financial or welfare decisions on their behalf at a future point, usually after the individual has lost capacity. Address correspondence to: Dr Catherine Pennington, ReMemBr Group, School of Clinical Sciences, University of Bristol, Learning and Research Building, Southmead Hospital, Bristol, UK. Different tools have been developed for different patient groups and decision-making scenarios—for example, the University of California, San Diego Brief Assessment of Capacity to Consent (UBACC) is a brief screening tool to help junior researchers identify research participants who need further capacity assessment [26]. The UK legislation requires that we both promote residual capacity where possible, and protect vulnerable adults who cannot make independent decisions. It affects more than one cognitive domain (for example memory, language, orientation, or judgement) and social behaviour (for example, emotional control or motivation). Papers were screened by title, then abstract. Also, capacity is decision specific, meaning separate decisions require a standalone mental capacity assessment. Finally, the very act of deciding to carry out a capacity assessment is not, itself, neutral, and the assessment process can, itself, often be (and be seen to be) intrusive. A key challenge in capacity research is the lack of an objective ‘gold standard’. Even mild cognitive impairment can considerably impact on decisional capacity [16, 21, 23]. Their dominant consideration is often ‘safety’. Copyright © 2020 British Geriatrics Society. In some cases, judging capacity is straightforward, whilst in others there may be disagreement between different clinicians, assessment tools or between tool and clinician [25]. They cannot understand information relevant to the decision. Aid to Capacity Evaluation) do not meet the UK requirements. For example, there might be days or even times of the day when the person can think more clearly. This will allow people to be supported to have the highest level of capacity possible and permit those lacking capacity to have their views heard. The perceived ‘safest’ option is usually to discharge to a care home, although it is difficult to know whether someone will really be ‘safer’ (i.e. Many conditions cause a fluctuating cognitive state, for example Lewy body disease and delirium. Patients may fail a test of capacity due to fixed, abnormal illness-related beliefs, rather than impaired understanding, recall or communication [9]. These were evaluated against the UK legal requirements. The Mental Capacity Act 2005 (HM Government, 2005) is all about consent. Hopemont capacity assessment interview (HCAI) [. Here, we review the UK legal framework for defining mental capacity, and published capacity assessment tools. Deprivation of Liberty Safeguards (DoLS) are an amendment to the Mental Capacity Act (2005) to ensure that any care restricting a person's liberty is appropriate and in their best interests. This allows decision-specific assessments and simplification of information. It also avoids confusing adults with cognitive impairment by discussing hypothetical situations—a discussion that is arguably more complex than discussing a real-life, personally relevant decision. Expert raters viewing the same footage of a structured assessment achieve high levels of inter-rater reliability [28]. An opportunity to pick up younger onset dementia in your patients under 65 years of age 2. Decisions must take account of the views of relevant others. Many professionals can assess mental capacity, but none are better placed than an Old Age Psychiatrist with considerable experience and expertise, like Dr … Therefore, several otherwise useful tools (e.g. MacArthur Competence Assessment Tool for Treatment (MacCAT-T). Buckles VD, Powlishta KK, Palmer JL et al. Structured interview, adaptable to different scenarios. High inter-rater reliability. This question is for testing whether or not you are a human visitor and to prevent automated spam submissions. Semi-structured interview. These include: 1. For example, ... A mental health problem. Someone lacking capacity because of a disability or illness such as a learning disability, dementia or a mental health problem would be unable to do one or more of the following four things: Understand information given to them about a particular decision Retain that information long enough to be able Assessing capacity is clearly more challenging in borderline cases. Further work in people with neurodegeneration would be of great interest, particularly investigating the role amnesia plays in impaired capacity. Informal ratings by the clinical team or relatives are much less reliable than either expert opinion or structured assessments [9]. London EC1M 4DN, Decisions, Decisions, Decisions: How to assess the mental capacity of people with dementia. Disagreement about capacity (either between professionals, or between staff and the patient or relatives) should prompt a detailed assessment and open discussion. A combination of the opinion of a healthcare professional or researcher trained in capacity evaluation, plus the use of a structured assessment tool is the most robust approach. Any decision for an adult lacking capacity made must be the least restrictive option available for their basic rights and freedoms. A systemic review was undertaken of tools for the assessment of mental capacity (Box 3). Decisions about mental capacity should never have a blanket approach, and professionals should tailor their methods to the individual and decision in question. Some are aimed at specific patient groups or decision, whilst others are culture specific. Against a singular understanding of legal capacity: criminal responsibility and the convention on the rights of persons with disabilities. Information must be provided in an appropriate format, which may mean using simplified language, visual aids or other communication means. 1. How can we evaluate the potential of innovative vaccine products and technologies in resource constrained settings? Vignettes around planned treatment. Generally, a capacity assessment should be related to a specific decision that you are making. The following keywords were used as search terms: ‘mental capacity’, ‘informed consent’, ‘capacity assessment’. A learning disability. Alternatively, it may be that structured assessments (particularly research tools) are too stringent. People with dementia should not be assumed to lack decision-making capacity. Additional relevant publications were identified from selected publications. a wide range of mental capacity assessment instruments is available, but not all fulfil the UK legal requirements. people with mild cognitive decline, or indeed any older adult), consider PoA for future use. As the elder population continues to grow, local, national, and international changes are occurring in criminal and civil litigation. Capacity can vary day-to-day, or even hour-to-hour. Mental capacity is a functional term that may be defined as: the "mental (or cognitive) ability to understand the nature and effects of one's acts.". Groups such as those with anorexia are particularly challenging to assess, as they are typically high functioning individuals, and their illness is part of their personal identity. A systemic review was undertaken of tools for the assessment of mental capacity (Box 3). Moye J, Gurrera RJ, Karel MJ, Edelstein B, O’Connell C. Cairns R, Maddock C, Buchanan A et al. A deprivation of liberty occurs when a person does not consent to care or treatment, for example, a person with dementia who is not free to leave a care home and lacks capacity to consent to this. Dementia. Thirty-nine adults with mild to moderate cognitive impairment; 90 adults with AD, 92 with MCI. It has been suggested that in clinical practice, clinicians may equate treatment refusal with lack of capacity and treatment acceptance with competency. Your comment will be reviewed and published at the journal's discretion. The ability to retain information sufficient to make a decision is specified in the UK law: tools which require recapping of information were deemed to have met this standard. Multiple tools exist to aid in the assessment of decision-making capacity. This article aims to make that clearer.We’ve also included links to som… Clinicians should elicit opinions on future care at an early stage, to use in future ‘best interests’ decisions when an individual has lost capacity. They cannot retain information for the time required to make the decision. Structured Interview for Competency/incompetency assessment testing and ranking inventory [. Peri-operative care for surgical patients, Grants, Fellowships and Research Proposals, Tools for testing decision-making capacity in dementia. There is an increasing awareness of the impact of social and cultural factors in decision making. Changes in care: capacity and decision making. These must always be assessed in a sensitive and careful fashion, to both maximise a person’s decision-making abilities and to protect those persons who are unable to make decisions for themselves. The assessment of someone’s mental capacity to make an important decision often requires a specialist expert. As dementia progresses, there is a concomitant progressive loss of capacity. For permissions, please email:, This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (. . Assessing mental capacity can be a daunting task for both health care professionals and loved ones, particularly as the legal definition of capacity varies between different countries. Tomoda A, Yasumiya R, Sumiyama T et al. Such changes could be brought on by the impact of a mental illness, physical illness, the use or withdrawal of medication, the use of illicit substances or alcohol. Therefore, some tools are not compatible with the UK law because they do not assess all the key principles defined therein, or they include a test of ‘reasonableness’. People with dementia experience changes to their ability to understand, evaluate and retain information, and may have problems expressing and remembering their decisions. Altered mental capacity can affect not only adults with dementia, but also those with learning difficulties, acquired brain injury or mental health disorders. Much longer, more detailed instruments exist for those conducting empirical research into capacity itself, such as the MacCAT-CR. Scottish Parliament Adults with Incapacity (Scotland) Act 2000. If a person lacks capacity, any decisions made must be in their best interests. Determining whether an individual has the ability to make a specific decision can be very challenging for both clinicians and researchers. The war against dementia: are we battle weary yet? 'Mental capacity' means being able to successfully make your own decisions. Clinicians and researchers must objectively assess understanding and retention of relevant information, and ability to use information to make and express a choice. We evaluated published instruments designed to aid in the assessment of capacity, focussing on those meeting the UK legal requirements. Prisons and Probation Ombudsman for England and Wales Older prisoners: learning from PPO investigations. However, there are contrasting legal and clinical approaches: clinicians often view capacity as a gradient, whereas the legal approach is more dichotomous. For example: A carer or support ... for example there may be a medical diagnosis of Dementia or a learning disability. Appelbaum PS, Grisso T MacArthur competence assessment tool for clinical research (MacCAT-CR). They are not able to communicate a decision (whether by talking, using sign language or any other means). In the UK, individuals must have mental capacity to set up (or revoke) a PoA. For consent to be valid, the person giving it must have the mental capacity to understand what they are consenting to; it is the same as any other contract or agreement. Can be charged to MBS item #717 1. It can also change in both the short term and the long term. The person is unable to make the specific decision under consideration. Admiral Nurses are dementia specialist nurses who provide the compassionate one-to-one support, expert guidance and practical solutions that help families face dementia with more confidence. There is a clear need for professionals to make accurate and reliable decisions regarding capacity, preferably in a standardised manner. The End of Life Care in Advanced Dementia Project. One small pilot study of 20 psychiatric patients reported only. that capacity assessment will then determine whether or not it has jurisdiction to take further steps in relation to P. 13. Lawton IADL scale in dementia: can item response theory make it more informative? They are not required to understand more complex details about financial and divorce rights. Please check for further notifications by email. The Mental Capacity Act applies to all professions – doctors, nurses, social workers, occupational therapists, healthcare assistants, and support staff. Individuals scoring highly on neuropsychological tests may lack capacity, whilst others with significant cognitive impairments retain it [22]. However, a dementia diagnosis does not automatically equate to incapacity. Dedicated training in capacity concepts and legal definitions improves inter-rater reliability and reproducibility [9]. Development and Application of High-Throughput Single Cell Lipid Profiling: A Study of, The five key principles of the Mental Capacity Act 2005, Assessment of capacity for everyday decision making [. My Mum had a Mental Capacity Act assessment following a fall at home. For everyday purposes (rather than use in research into capacity itself) toolkits that allow tailoring of the information to an individual decision are preferable. Mental Capacity Assessment Dementia Example (Download) Mental Capacity Act 2005 Summary (Download) When carrying out a Mental Capacity Act Assessment, one must consider the 2 stage capacity test. Health and social workers may assume capacity is present because either an individual agrees with the professional’s plan, or they say ‘yes’ when asked if they understand. All practical steps to help a person to make a decision must be taken. . One risk that may undermine the scope of capacity assessments is that they become a memory test—some involve extensive questioning, which draws heavily upon memory. Tailored to specific treatment decision. This can be used when assessing the mental capacity of a person with dementia. A refusal of or request for treatment may seem irrational to outsiders until the personal background is painted into the picture. Tel: 0131 651 7828. The original SICIATRI requires patients to take responsibility for healthcare decisions, which may be culturally inappropriate for older adults who expect decisions to be made by clinicians. Some are more stringent than UK law requires, whilst others are not stringent enough. The Mental Capacity Act code of practice lists examples of when a professional might be ... although Mrs Smith has dementia, her capacity to make a decision should not be questioned ... Before I started the second element of the mental capacity assessment, known as the ‘functional . In such cases using structured tools or seeking a second opinion from a trained professional is sensible. The majority affected are older adults, who experience progressive cognitive decline. Most are structured or semi-structured interviews, where patients are given information about a real or hypothetical treatment scenario, then asked a series of questions to probe understanding, ability to use the information to inform a decision and ability to express a decision. There is a risk of serious harm to those who refuse medical or social care, and professionals who fail to conduct adequate and timely capacity assessments may be guilty of wilful neglect. No formal assessment procedures are required for health care assistants or support staff. The UBACC was derived from the MacCAT-T as a brief screening tool for clinical trial participants. Thus, a capacity assessment may only occur if the patient refuses treatment. This is broadly consistent with the UK legislation, but we should emphasise that the UK law makes no requirement that a decision is reasonable or logical. This work focuses on methods of assessing capacity meeting the UK legal requirements, and critically appraises current knowledge to identify what may be a gold standard approach towards the assessment of capacity. The complexity of capacity assessment means it is unlikely to be successfully reduced simply to a score on a memory test, or tick boxes in a questionnaire. Adaptable to different scenarios. 1. Sensitive exploration of underlying beliefs and attitudes allows the clinical team to adapt to promote capacity. There are several opportunities in the practice to screen your patients for possible cognitive impairment and dementia. Carney M, Neugroschl J, Morrison R, Marin D, Siu A. Gerstenecker A, Niccolai L, Marson D, Triebel KL. Wong JG, Clare CH, Holland AJ, Watson PC, Gunn M. Gurrera RJ, Moye J, Karel MJ, Azar AR, Armesto JC. have reduced morbidity and/or mortality) residing in an institutional fa… Ways to optimise capacity include approaching an individual on a ‘good day’ (best identified by the patient, relatives or knowledgeable carers) and at a preferred time of day (e.g. If a person is later judged to have already lost capacity when they entered into a business or marriage contract, or made a will, these are deemed void. Capacity is assessed based on the process of decision making rather than the content of the decision itself, and under UK legislation a decision does not have to be rational, reasonable or logical. Searches were conducted between December 2016 and February 2017, limited to papers published in English after 2000. Publications dealing with capacity assessment and tools for evaluating capacity were selected. For full access to this pdf, sign in to an existing account, or purchase an annual subscription. Whilst many studies are limited by small sample sizes and limited replication, they highlight variability in clinician judgement, and bring into question what should be our gold standard capacity assessment. Traditionally, decisions regarding competency ultimately rest with the responsible clinician or researcher, but how well different professionals agree with each other and structured assessments is unclear. Health and social care professionals must be vigilant to prevent neglect, particularly when individuals with complex neurodegenerative or neuropsychiatric conditions refuse interventions. To consent to a marriage, an individual is only required to have a simple understanding of the basic concept. Adaptable to different scenarios. Mental Capacity and Competency. Health care professionals working with these groups should familiarise themselves with their local legal requirements, seek out training on the bedside assessment of capacity, and consider using one of these structured tools to assist in the thorough evaluation of their patients' mental capacity. When considering which to use, the clinician or researcher should consider what their question is. ReMemBr Group, School of Clinical Sciences, University of Bristol, Bristol Brain Centre, Southmead Hospital, Bristol, UK, Neurology Department, North Bristol Trust, Southmead Hospital, Bristol, UK, Centre for Dementia Prevention, University of Edinburgh, 9A Bioquarter, 9 Little France Road, Edinburgh, UK. This may arise from a genuine concern about welfare but might also involve fear of blame or litigation arising from an adverse incident following discharge. Some instruments can be tailored for a specific decisional scenario, whilst others are designed for use by particular patient groups. As such, it does not fully assess capacity, but is useful in screening for high-risk individuals who require further assessment, and has the advantage of being suitable for use by a graduate level researcher. More complex decisions will require greater cognitive ability. It seems there is also sometimes little consultation with the person in care or their representative.Many people are confused about what a Mental Capacity Assessment (MCA) actually is – and when it should be used. Understanding, retaining and using information are typically impaired, with expression of choice often remaining intact [24]. a search of electronic databases was made for articles published between 2000 and 2017 detailing structured tools for the assessment of mental capacity. Catherine Pennington, Katie Davey, Ruud ter Meulen, Elizabeth Coulthard, Patrick Gavin Kehoe, Tools for testing decision-making capacity in dementia, Age and Ageing, Volume 47, Issue 6, November 2018, Pages 778–784, Other examples are the effects of a stroke, some mental health problems or having a learning disability. It is therefore not surprising that there is a significant variability in tool design and results. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide, This PDF is available to Subscribers Only. 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