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Supporting people with dementia

Julia Pitkin and Rosemary Hurtley explore approaches for supporting those with dementia, including understanding your own behaviour and how it affects those you support.

A cure for dementia is a long way off so whilst we are supporting people with dementia, we need to find ways that help them to stay connected and experience a good quality of life. Best practice needs to move beyond awareness towards deeper evolving empathy.

Empathy can be explained as a flow of small interactions and gestures that give a positive message to someone. It expresses concern, warmth and feeling, conveying that the person is important, that you are listening and that you want to understand.

Empathy, understanding and validation can help a person with dementia to feel understood, included and involved. It can benefit them immensely as well as benefiting staff and the wider organisation too.

Working in dementia care it is not just about supporting the person living with dementia to understand you. It is about you learning their language, both verbal and non-verbal, and responding with genuine empathy and understanding.

When supporting people with dementia, we know that:

  • 7% of the message we communicate is in the words we use.
  • 38% is based on our tone of voice (pitch, emotion).
  • 55% is communicated by our body language (gestures, expressions, positioning and eye contact).

Professor Tom Kitwood deduced that, if you look beyond the person with dementia and any behaviour you find difficult to manage or comprehend, you can see that the person is searching for security, control, love, attachment, usefulness and the need to be included. These are basic human needs for everyone. But how do you do that?

Building relationships and understanding

To develop a relationship, based on empathy, with the people you support, you need interpersonal skills. You need to be able to overcome any barriers to communication, to express yourself effectively both verbally and non-verbally. For the relationship to move beyond supportive to become therapeutic, the individual, who may have been struggling to express emotional or psychological need, is able to express themselves and feels that they are heard and acknowledged.

One way of doing this is to use validation. Validation is a relationship-centred approach to working with people living with dementia. It is based solely on your relationship with the individual, your understanding of them and their needs, their life history and what they are trying to communicate. It involves having the empathetic attitude described above as well as an holistic view of the person. In a nutshell, it is skilful interaction that develops a trusting relationship between you and the individual.

In order for it to help support the individual, you need to work with connections from their life experiences, language and behaviours. It has the ability to help to reduce their stress or distress, identify any unmet need they may be experiencing, enhance their dignity and increase their wellbeing.

Applying these techniques

There are eight principles that can help care staff to communicate and support people with dementia using validation to build the therapeutic relationship.

  1. It is important to acknowledge the world from the perspective of the individual experiencing dementia1.
  2. Understand the impact past life events have had on the individual and how these may affect their experience of dementia now1.
  3. Appreciate that individuals experiencing dementia have a unique language. The responsibility for learning this language is with you rather than expecting them to understand your language.
  4. An individual experiencing dementia can express strong feelings. It is important to remain centred and calm, focusing on the person, not the dementia or yourself2.
  5. The relationship must create a safe, social environment where the individual can express their feelings without fear of judgment or exclusion3, 2, 1.
  6. You need to have an understanding of the psychological needs of the person with dementia, as described by Kitwood.
  7. Consider that events happening in the present may trigger the memory of events in the individual’s past and with this comes the associated feelings.
  8. A therapeutic relationship is created by repeatedly using conversational skills that meet the individual’s psychological needs and acknowledge their feelings. This will help them to live as well as they can with dementia.

To build a relationship based on empathy and understanding, staff need to:

  • Get to know the individual living with dementia, their likes, dislikes, life history, family, significant events and more.
  • Understand the world from the individual’s perspective.
  • Put themselves in a place of inner calmness.
  • Use body language that shows empathy.
  • Learn to read body language, tone, rhythm, touch and facial expressions.
  • Use listening skills such as rephrasing and reflecting techniques.
  • Use spoken language skills that are pitched to the person with dementia’s specific stage and level of verbal abilities.
  • Meet any psychological need the person may have such as love, identity, control, inclusion, occupation, comfort and attachment.

Once the relationship has been built it needs to be maintained. In order to keep the relationship moving forward you must:

  • Maintain their trust and respect.
  • Continue with the conversational skills that demonstrate empathy and understanding.
  • Continue to identify any emotional or psychological need the person may be missing.
  • Work with the wider care team and families, sharing what everyone knows about the person so they continue their life’s journey. 

Benefits of this way of working

There are numerous benefits of this approach for people with dementia, care staff and the wider organisation.

For the person with dementia, the benefits include:

  • Increased signs of emotional wellbeing, such as enhanced mood and social engagement.
  • The individual’s ability to communicate verbally and non-verbally improves.
  • Their willingness to assume familiar social roles grows, reinforcing their sense of purpose and identity.
  • Reduced reliance on medication and environmental restrictions, because behaviours are now understood by care staff.
  • Increase in physical activity, facial expression and sense of humour as the relationships around them become warm, safe and rewarding.
  • Assisting the individual to resolve unfinished life tasks appropriate to their developmental stage.
  • Reduced signs of ill-being behaviours, described as, ‘crying’, ‘pacing’, ‘searching’, ‘calling’ and ‘pounding’, as staff learn each individual’s language and respond appropriately with empathy.

Benefits to the staff and organisation include:

  • Care and support are designed around those relationships that meet the person’s emotional and social needs.
  • Staff express a greater sense of fulfilment at work.
  • Staff feel more capable of handling difficult situations, therefore morale is increased and the threat of job burnout is reduced.
  • Family morale and involvement in supporting the individual is increased, whether at home, hospital or in a care home.

Empathy, understanding and validation can help a person with dementia to feel understood, included and involved. It can benefit them immensely as well as benefiting staff and the wider organisation too. These techniques involve time spent getting to know the individual, understanding them and their needs but also being self-aware and understanding your response to what they are communicating.

Rosemary Hurtley is a health and social care consultant and a certified validation worker. Julia Pitkin is an occupational therapist with a specialism in dementia and is a certified validation trainer. Twitter: @360Fwd

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