This article comprises of excerpts from a new guide on Community Care Inform Adults about dementia assessment, care planning and review, written by Marijke Post, team manager in a local memory service. The full guide covers the holistic model of dementia, the role of environment and prevention in assessment and assessing carers. Subscribers can read the guide on Inform Adults.
The assessment of someone with dementia starts with recognising them as a person and that their views, wishes and opinions matter, whatever their level of cognition or communication skills. This is enshrined in law. Both the Care Act (section 9) and the Social Services and Well-being (Wales) Act (section 19) state that assessments must seek to identify the outcomes that the person wishes to achieve day-to-day. They also require local authorities to involve the adult in the assessment, as well as any carer and, in the case of the Care Act, anyone else the person wants to be involved.
People may not be able to engage fully in the assessment due to communication difficulties or because they are distressed by the process. For example, someone who can no longer manage their own personal care, but does not recognise this fact, may become agitated when their care needs are discussed. Where the person would otherwise face substantial difficulty in being involved in the assessment, and there is no one appropriate to support their involvement (such as a family member), both the Care Act (section 67) and the Well-being Act (the code of practice under part 10 of the act) require local authorities to arrange an independent advocate to support and represent them in order to facilitate their involvement.
The person with dementia would need to face substantial difficulty in any one of the following areas to qualify for an advocate (if they have no appropriate person to support them):
- understanding relevant information;
- retaining that information;
- using or weighing that information as part of the process of being involved, or
- communicating their views, wishes or feelings.
Similar duties apply in relation to care and support planning and reviews or revisions of care plans, as well as safeguarding processes.
Communication is a key element of the assessment process. It is about how you approach and engage with the person. Guidance under both the Care Act (paragraph 6.37) and Well-being Act (paragraph 53) state that the assessment process should be designed around the person’s communication needs. How you communicate with someone will determine the relationship you form with them. If you can establish a good rapport, it will help them let you know what their strengths and challenges are and what support they need to improve their wellbeing. It will also help in your continuing relationship with the service user for care planning and reviews.
When you see someone with dementia you know that they are likely to have memory problems, so there is no need to test this by saying “Do you remember who I am?”.
If they know, it is likely to offend them, and if they don’t know, it is likely to cause anxiety. It is much better just to say who you are at the start and you could add when you last saw or spoke to them to make it easier for them to recall you.
People with memory problems find it easier to remember or recall when they are given cues or triggers. For example, during an assessment the practitioner might remind them that they were recently in hospital and that while there they were referred for an assessment.
It is good practice to establish how the person with dementia wants to be addressed. Not only is it polite, it can also help to understand their reality. People with more advanced dementia can believe they live in a different era and if they think they are a lot younger, they may not recognise their married name, for example.
Not every person will feel comfortable using the term dementia, as there is still a lot of fear and stigma about the condition. When you discuss the service user’s condition as part of your assessment, it is good practice to let them lead on how they talk about it. Many people will prefer to use the term “memory problems”.
The language used in assessments, care plans and reviews should be dementia-friendly. People with dementia have said that professionals should not assume that all people are “suffering” with dementia. Terms like “suffering,” “challenging behaviour,” and “dementing” portray people with dementia in a negative light. People can live well with dementia and this should be reflected in the language that we use.
Verbal communication is almost always affected in people with dementia. This can be due to problems in language skills, such as difficulty in finding the right words; problems with memory or concentration or because the person at that time is experiencing a different reality from ours.
Non-verbal communication becomes more important when people with dementia start to lose their language skills. It can often give clues to how the person is feeling and what they are trying to communicate. For example, certain pain scales rate the person’s facial expression to determine whether they are likely to be in pain.