Adults with incapacity: guide to assessing capacity

Chapter 5: Performing capacity assessment with specific care groups

1 This chapter looks at six major groups of people who may have impaired capacity to act or make some or all decisions for themselves.

• People with neurological conditions
• People with dementia
• People with a learning disability
• People with a severe or chronic mental illness
• People with alcohol related brain injury
• People affected by a severe stroke

2 The first question to consider is whether there is the necessary expertise and experience within the team to communicate with and assess the capacity of the adult to make the decision/s in hand or whether it will be helpful to seek specialist involvement.

People with neurological conditions

3 People with neurological conditions, whether organic or caused by injury, whether progressive or stable, can present with challenging and complex capacity issues. They may proceed through stages of deterioration and/or recovery. This has implications for the timing of the capacity assessment as well the need for a periodic review of capacity. It may be advisable to request a neuro-psychological or specialist assessment. (A variety of batteries of tests are available sensitive to cognitive dysfunction for different conditions).

Implications for assessment

Rarely neurological disease can manifest as a result of changed genetic coding, e.g. Huntington's Disease ( HD). When assessing the capacity of people with hereditary conditions it is crucial to have some appreciation of the familial impact of living with the disease and the severe health challenges whole families face.

Factors which influence a person's capacity with a neurological condition may include

• Apathy
• Agitation
• Attention deficit
• Anxiety/panic disorders
• Irritability
• Rigid thinking
• Denial (which may be truly organic)
• Inability to put events in order of importance
• Reduced capacity to organise information
• Paranoia, depression, psychosis and other mental health problems
• Disinhibited behaviour
• Grief (as a result of the many losses individuals experience)
• Controlling impulses
• Controlling feelings
• Impaired judgement
• Monitoring self awareness
• Creative thinking
• Problem solving
• Visual/spatial abilities
• The ability to begin and end activities
• Problems with memory. It is critical to differentiate between the ability to learn from the ability to remember. Typically individuals with 'true' memory problems have difficulty with the latter - remembering. Many people with neurological conditions, e.g. Huntington's Disease (although frequently referred to as a dementia) do not have a primary memory deficit.
• Sleep disturbance
• Motor impairment
• The effects of medication
• Certain neurological conditions produce changes in personality, e.g. hostility, suspiciousness, drive, apathy or emotional control (rage, agitation, disinhibition) that can be either associated with or independent of changes in cognition. However, not all psychopathology is associated with the result of neurological disease.

Typically these changes are a result of changes that take place in the brain, but the environment (including people, events, health issues) can also influence the assessment of capacity, e.g. when a person with HD has an infection this can markedly increase their incapacity cognitively, mentally and physically.

Communication for people with neurological impairment is often compromised as it requires a complex integration of thought, muscle control and breathing. All three of these functions may be impaired. As a consequence articulating and initiating conversation, organising what needs to be said requires knowledge of the individual and careful preparation. Understanding what is being said to you may be difficult to interpret.

Communicating effectively - Huntington's Disease

In addition to the general points on communication made earlier in this guide, the following approach is advised in relation to people with Huntington's Disease:

• be calm, gentle, matter of fact and relaxed;
• use touch to show that you care;
• build trust by starting initial communication socially;
• use good eye contact and try to be at eye level;
• keep rate pitch and volume of speech low as easier to hear;
• set up appropriate communication aids before communication becomes difficult;
• listen actively. If you do not understand apologise and ask the person to repeat it. Repeat back and rephrase what you hear so that the person knows what parts you understood and what needs repeated;
• respond to the emotional tone. If the person sounds upset acknowledge those feelings even if you cannot decipher the words;
• praise and encourage all efforts.

People with dementia

4 People with dementia should not be assumed to be incapable of making decisions. In the early stages, intellectual deterioration may not have progressed sufficiently to affect their ability to make decisions. However it will be important to discuss future decision making with them, including the benefits of appointing someone with power of attorney, whilst they are still able. Points to consider:

• People with dementia may have fluctuations in their cognitive functioning over a day or several days, so timing for a capacity assessment while the person is functioning well will be important.
• People with dementia (the majority of whom are 75+) will have long history, both personal and medical, that will influence their response to their present circumstances.
• Cultural diversity amongst elderly people is very significant. Cultural, including religious and gender norms and family traditions may be very different and have a profound effect on everyday decision-making.
• There is an increased prevalence of medical problems in older people. Fatigue, decreased concentration, poor hearing and diminished eyesight may result from conditions that are far more prevalent in older people. Many of these conditions are treatable and will influence communication and ability to be involved in decision-making.
• Older people may not have experience of dealing with statutory authorities and may be particularly anxious about the formal assessment processes and resent any involvement from other agencies.
• Older people may be especially concerned about others trying to force them out of their home and into an institution.

Implications for assessment

• In assessing the capacity of someone with dementia it may be necessary to involve a specialist clinician to understand how information processing deficits may affect decision-making capacity. For a person over 65 this could be a psychiatrist in old age or for a younger person a neurologist; or a clinical psychologist in this specialist area.
• The professional carrying out the assessment will need to determine if the person's preserved intellectual and information-processing abilities are sufficient to support reasoned decision-making with respect of their current situation. He/she will also need to assess the person's ability to follow through on his/her stated intentions. Potential issues may include: self-control, planning and self-reflection, which may undermine the person's stated intentions, and may interfere with his/her ability to appreciate the consequences of his/her actions.
• Staff involved with making an initial assessment will need to use their judgement on whether to involve a specialist medical practitioner with knowledge of how a diagnosis may impact on mental functions. It is important to recognise that brain damage/dysfunction does not impair decision-making in a uniform fashion. The decision-making process can be affected at different levels or in different ways.

People with a learning disability

5 Because someone has a diagnosis of learning disability, this must not undermine the presumption that he/she has decision-making capacity. Characteristics associated with specific syndromes cannot be presumed to be evidence of incapacity, e.g. in Down's Syndrome, there is an extensive range of ability. Similarly difficulties in communication should not be confused with incapacity.

Factors to consider in carrying out an assessment of capacity

Decision-making skills may be under-developed as a consequence of the limiting experience of restrictive environments, e.g. institutional, over-protectiveness or other externally imposed barriers to growth and development, including sometimes negative expectations of progress by professionals. The importance of applying the fifth general principle under the Act is crucial here whether or not it is decided that an intervention under the Act is needed: 'in so far as it is reasonable and practicable to do so, encourage the adult to exercise whatever skills he/she has concerning his/her property, financial affairs or personal welfare, as the case may be, and to develop new skills'.

Implications for assessment

• It is important to recognise the limitations of generic cognitive tests in assessing the capacity of people with a learning disability (and others), in relation to the specific decision in hand. A low score can be misleading. The importance of the needs assessment cannot be over stressed. Specialists in the field will know what the most up-to-date knowledge, supports and services are available to assist people with a learning disability in communicating and making decisions.
• People with a learning disability, particularly those who have been institutionalised, may have had greater than usual exposure to assessments of various kinds. There may be resistance to yet another intrusion by an authority figure. Alternatively, behaviour conditioned by the need to survive in the system may result in total compliance and a need to provide the assessor with the expected response. There may be anxiety in the face of the threat of loss of autonomy.
• In addition to the above, life experience is likely to be lacking for someone who has spent many years in institutions, and as a consequence his/her ability to make informed choices will be severely limited. The solution to this is to offer opportunities to experience situations relevant to proposed changes. Staff involved with assessments should have an understanding that these factors that may affect the person's responses and mask their real abilities. Every effort must be made to empower the person to express his/her views and wishes.
• You will need to be aware of the most appropriate way to communicate with the individual, including use of particular words and phrases, the use of talking-mats, etc. Be careful to put forward one idea or question at a time and give plenty of space for the person to consider his/her reply.
• You will need to be alert to the double standards and prejudice that can still sometimes be present against people with a learning disability, by others who may be part of the assessment process. Some individuals will have been prevented from making decisions for themselves because this may have been perceived as harmful in some way, thereby omitting the opportunity for the person to make and learn from mistakes as most of us do.
• You need to be alert to the fact that not all parents and family members are involved closely with the person, particularly when the person has been institutionalised. The family's perceptions of the person's capacity and their expectations for the person may be at odds with those of others who are in day to day contact with the person. Again independent advocacy can help.
• Those involved in assessing the capacity of someone with a learning disability should be aware of the impact that different factors can have in leading up to a crisis which may have precipitated the need for assessment under the 2000 Act. For example, the lead-up to an apparent crisis may have been intolerance or rigidity on the part of staff or care-givers with respect to autonomy in less critical situations. Escalation of the situation might have been avoided by more reasonable responses to the initial incident. For example, treating an expression of frustration as non-compliance and imposing further controls, leads to an increase in frustration, possibly violence and stricter control, e.g. guardianship. Modification of environment and assistance with stress or anger management may have been all that was required.

People with severe or chronic mental illness

6 Factors to take into account in assessing capacity

• Stigma in relation to mental illness is still a big issue in the community. You should be sensitive to the fact that the person may feel especially stigmatised by the assessment process and do all you can to help the person to feel empowered in the situation.
• Psychiatric disorders as such do not automatically imply incapacity in any area of decision-making.
• Delusions (fixed false beliefs) as such do not imply impaired decision-making (unless the delusion is in respect of the decision to be made).
• Individuals who are hallucinating (hearing voices, seeing things which are not there) may find it hard to concentrate as they may be easily distracted by the hallucinations.
• Individuals with depression may find it hard to concentrate during the assessment; depression itself may dramatically impair concentration.
• Individuals with depression may have trouble seeing the potentially positive outcomes of changes in their current situation and may refuse all help.
• Individuals who have been treated with some drugs, such as neuroleptics, may present with physical symptoms and these should not be confused with the capacity to make decisions. The effects of a heavy dose of neuroleptics may make the person sleepy, lack concentration, and have difficulty articulating.
• The person's capacity to act and make decisions may fluctuate with changes in his/her condition.
• Other mental disorders may impair judgements, e.g. those with mania may have an unrealistic understanding of their abilities.

Implications for assessment

• It is important not to assume that because someone with a mental disorder he/she cannot adequately discuss the issues in hand.
• It is important to try to understand how the mental disorder affects the individual - remembering that capacity is being assessed only in relation to the particular matters in hand. Only those areas being assessed are particularly important. Delusions or misperceptions resulting from the mental disorder are only relevant if they relate to the issues in hand, e.g. specific delusions about money matters.
• You may need to proceed slowly to ensure that the person can concentrate and focus on the issues in hand. You may need to see the person over several visits to get to know them and begin to understand the 'person' in relation to the disorder.
• You should consider the person's mental state in relation to the effects of short-acting sedation or recent medication changes and whether to delay assessment until a more appropriate time.

People with alcohol related brain injury

7 Alcohol related brain injury is associated with a change in thinking and memory abilities. It affects the way people learn and understand new information and how they communicate with others. You can help people with alcohol related brain injury improve their communication skills by keeping the discussion focused and checking that they have understood what has been discussed.

Keeping the conversation focused

People with alcohol related brain injury often have difficulty with focusing on a topic of conversation. They can be easily distracted by less relevant points of discussion and wander off in other directions. You can get them back on track by:

• reminding them of the conversation topic;
• redirecting the conversation by repeating a question;
• using a pencil and paper to focus discussion.

Communicating effectively

Keep the following points in mind when giving instructions or information:

• use concrete and familiar terms;
• break down information into small important points;
• slow down when you talk; and
• focus discussion on one topic at a time.

Beware of assuming people with alcohol related brain injury are understanding and remembering what is being discussed. Some people may nod their head and say they understand when in reality they don't. It is a good idea to check their understanding and retention of information by asking the person to repeat what you said in his/her own words.

Dealing with memory and retrieval problems

Many people with memory problems linked to alcohol related brain injury respond best to closed rather than open ended questions. That is, it is easier to respond to questions where they can provide a 'yes' or 'no' answer. For example, instead of asking, 'What did you do today?' ask, 'Did you go out today?' Communication can also be improved by providing cues or prompts to trigger memory.

Consider how you appear to the person

When you are trying to communicate clearly and get a message across it is important to consider how you appear to that person. The person with alcohol related brain injury needs to feel comfortable with you and feel that you understand his/her needs and frustrations. You should aim to be non-threatening and non-judgmental.

Things to remember

• Keep conversations focused and on track.
• Give prompts or cues to trigger memory.

Check understanding of information by asking the person to repeat what you said in his/her own words. Be non-threatening and non-judgmental.

People affected by a severe stroke

8 Difficulty in communicating does not mean the person has impaired intellect.

• Remember the person may have more difficulty on some days than others, particularly if they are tired, upset or under pressure.
• Remember that communication is more than just words - watch and listen to how something is being communicated.
• Try to establish a reliable 'yes' and 'no' between you. Remember gesture may be more reliable than speech.
• Speak slowly and clearly at normal volume.
• Use short sentences keeping language simple and offering choices when asking questions.
• Encourage the use of simple gestures, thumbs up or down, pointing, miming. Be prepared to support your own speech with simple gestures too.
• Keep pen and paper handy for you and the other person to use.
• Writing and drawing might be helpful - write down important words to help focus the conversation.
• Write down choices to help the person pick the right words.
• Encourage the person to try to write - even a couple of letters may help find the word he/she is searching for.
• Ask for repetition especially if someone's speech is slurred or indistinct.
• Clearly indicate when you have understood - use facial expressions and intonation to support your speech when conveying meaning, understanding and encouragement.