Why understanding emotional needs is critical to good assessments of people with dementia

By Laura Cook

There are many challenges to ensuring that the care workforce is skilled to support people with dementia. As the Prime Minister’s challenge on dementia 2020 states, all health and social care staff working with people with dementia must be able to deliver high-quality care and support. Training must also extend not only to those delivering care, but to those responsible for carrying out needs assessments, such as for social care support or NHS continuing healthcare.

There is no doubting that it can be difficult to assess the needs of a person with dementia, especially a person living in the later stages of the condition when they may not understand the assessment or communicate their needs verbally. It will take a degree of skill and patience. An assessment, whether it is for health or social care support, is key to ensuring a person with dementia can have access to services which supports them to live well.

Assessment difficulties

Yet, Alzheimer’s Society hears that people with dementia do not get the services they need because many assessors do not understand the impact of dementia on their needs. One particular issue which has come to light is the difficulties in assessing the emotional needs of a person with dementia. Emotional and psychological needs should be included in the assessment for NHS continuing healthcare and, while assessments under the Care Act must include an assessment of the impact of the person’s needs on their wellbeing, including their emotional wellbeing.

Given the lack of practical guidance on this subject, earlier this year Alzheimer’s Society published a guide, written by the Association of Dementia Studies at the University of Worcester.  Although the guide was originally written with assessors of NHS continuing healthcare in mind, the society hopes that the guidance will be of use to all care workers in the field. In particular, social care assessors can keep it to hand when carrying out assessments for social care support.

The guidance emphasises that lack of capacity to make informed decisions does not mean lack of capacity to experience distress.

Spotting the signs

It provides clear advice on determining whether the person with dementia is experiencing hallucinations, depressed mood, anxiety or distress and underlines the importance of involving family members and professional care staff – particularly those who have spent a significant amount of time with the person with dementia – in the assessment process.

The booklet contains key questions and prompts to help assessors make valid decisions. It cautions not to fall for misconceptions that are commonplace and remember the following key facts:

1. Emotional distress may be communicated as behavioural disturbance. About 90% of people with dementia experience what is known as behavioural and psychological symptoms of dementia (BPSD). These behaviours include, but are not limited to, withdrawal, aggression and agitation. These behaviours can be an expression of unmet emotional needs or symptomatic of a general health problem, for example the person may be in physical discomfort due to hunger or pain.
2. People in the later stages of dementia do not become withdrawn and disengaged just because they have a cognitive impairment. Disengagement should not be dismissed as an inevitable part of cognitive impairment. Many people with advanced dementia may become withdrawn or disengaged as a behavioural response to distress, and thus withdrawal could be a key sign that someone is experiencing depression or anxiety.

Useful tips

The guidance also includes some useful tips to guide assessors. For example, it emphasises that non-verbal communication such as body language and facial expressions should be assessed, particularly if the person is unable to communicate using language. Assessors can look out for certain non-verbal clues which can indicate if a person with dementia is in distress, including:

• changes in breathing patterns (particularly an increased rate of breathing or unusually noisy breathing);
• body tension;
• fidgeting;
• repetitive vocalisation;
• crying;
• searching for family members to seek comfort;
• wringing hands or squeezing a blanket or other object;
• facial expression (eg grimacing, wide eyes, clenching teeth etc).

Above all, it is important to make the person with dementia feel comfortable during the assessment and so the guidance reminds assessors to ensure their own non-verbal communication conveys warmth and consideration.

The guide – Guidance for NHS continuing healthcare assessors: Evaluating emotional and psychological needs for people in the later stages of dementia – can be downloaded from Alzheimer Society’s website.

Laura Cook is lead policy officer at Alzheimer’s Society