850,000 people are estimated to be living with dementia in the UK. In the last year we have seen a 30% increase in patients at St John’s Hospice Inpatient Unit with dementia alongside other complex neurological conditions. This case study highlights how we are implementing special measures at our Inpatient Unit to support dementia patients and ensure that their individual needs are best met.

Mrs B was a 70 year old lady with Alzheimer’s who was admitted to the IPU from home for symptom control of pain due to advanced gastric stomach cancer. Mrs B was very distressed by her admission when she arrived on the unit with her son and daughter, mainly due to being moved to a new environment. 

As per the IPU admission process a holistic assessment was completed on her arrival by the medical and nursing team. Following this assessment and a discussion with the family it was decided a bed in the four bed bay would be the most suitable as the lady panicked when alone and at times could wander. Being nursed in a bay ensured staff could keep a closer eye on her and also have more time with the patient. 

The Activity Coordinators (volunteers with a focus on patient activities) were also made aware of Mrs B so that they could visit her when they were on shift and use conversation, newspapers or activities as a distraction.  

Mrs B’s family were exhausted, very stressed and emotional as she had not slept for several nights. In order to support them both psychologically and physically a 1:1 carer was put in place for a 48 hour assessment as Mrs B had high care needs and was at high risk of falling. The 1:1 Healthcare Assistant also completed a behaviour chart for the 49 hours, enabling both nursing and medical staff to identify patterns in pain and behavioural issues. 

All patients on the unit have a ‘what matters to me’ sheet completed jointly or with family members. It includes the main issues that are important to the patient and any other patient/family wishes. Patients also have a ‘what matters to me’ board detailing what is most important to the patient. This can range from coffee preferences to any visits planned for the day. It also reminds patients/carers of the nurses and Healthcare Assistant’s names allocated to the patient for the day/night. The board acts as a prompt for staff and volunteers, ensuring they can easily start conversations or reassure patients as needed.

These processes enabled the nursing team to narrow down the lady’s interests and ensure that she had suitable distractions. She enjoyed crosswords and having the paper read to her. Staff actively encouraged her to continue this.

Her routine at home was also included in the exercise and the nursing staff were able to mirror this as much as practicable. Any changes were discussed with her family and strategies were worked out jointly.

As the lady was admitted for symptom control it was vital that these were managed as this was feeding into her stress. Due to the complexities of Alzheimer’s, patients are unable to express their pain numerically or with accuracy – several methods were used with this lady including observations of non verbal signs, and visual pain charts which at times had some success but was not deemed by the team to be an accurate measure of her pain. 

The PAINAD score was introduced by the Specialist Palliative Care Consultant who felt that it might be a more successful monitor of both the lady’s pain and her response to amended analgesia (painkiller). This scoring system takes into account several areas of assessment: 

  1. Breathing (ranging from normal to laboured and noisy breathing)
  2. Negative Vocalisation (ranging from being relaxed to repeated troubled calling out and crying) 
  3. Facial Expression (ranging from smiling to facial grimacing)
  4. Body Language (relaxed to rigid, fists clenching and striking out)
  5. CONSOL ability (ranging from no need to console to unable to console)

The scoring system of the tool meant staff could track if her pain was absent, mild, moderate or severe and in the first few hours were able to administer analgesia appropriately to meet her needs.

As this assessment had a more holistic feel and did not just take one aspect of the patient’s demeanour it was much easier to attain an accurate score and to monitor her pain patterns. Over the course of 48 – 72 hours a pattern could be seen and analgesia could be titrated to fit that pattern. This meant that the patient was able to be pain free and enjoy the aspects of life from which she still took pleasure.

During her stay on the unit the patient was also able to enjoy the garden and spend quality time with her family. Overall she was calmer and more settled in her demeanour as a result of the physical and psychological care she received, the stay also provided much needed respite for her family.