We Are Family

We Are Family showcases the value of Dementia Care Matters' 'Feelings Matter Most' philosophy for people living with dementia, which recognises that people living with a dementia are more feeling beings than thinking beings.

Filmed at Landermeads Nursing Home, in Nottingham, UK, the film shows how the Butterfly Household Model of Care identifies that quality dementia care is all about the beauty of the moment and sharing and celebrating life:

 

Implementing John’s Campaign during the COVID-19 pandemic - An inclusivity improvement story

by Dianne Smith

Matron for Dementia, University Hospitals of Morecambe Bay Trust 


What change did you make?

We have offered, and continue to offer, John's Campaign throughout the COVID-19 pandemic.

John's Campaign was established to promote 'the right to stay with people with dementia' and 'the right of people with dementia to be supported by their family carers' - that carers should not just be ‘allowed’ but should be welcomed in hospital settings. 


What happened as a result of the change? What impact did it have on patient care?

Patients with dementia who were disorientated, unsettled, unable to articulate their needs, who needed advocate support from a family member, were still able to receive it. We needed to make some adjustments to the scheme by limiting numbers to one family member only to attend, and they needed to adhere to infection prevention protocols and produce a negative lateral flow test before arrival to the ward. 


What did you learn?

Sometimes it is about identifying and prioritising risks to patients. Patients with dementia are so vulnerable in hospital, and need the stability of support from a carer to help them with day-to-day care needs and decision making. When visiting stopped, we recognised that the scheme was missed for both patients and their carers/family. 

We needed to be really clear on what was acceptable, and what limitations needed to be in place to also minimise the risk of covid spreading with other patients and staff. Hence the production of the Standard Operating Procedure, produced by Patient Experience and the Matron for Dementia.


How are you making the change stick?

The Standard Operating Procedure has been developed and communicated well throughout the Trust, and is in use in every clinical area in both inpatients and outpatients, both planned and emergency admissions. 

We need to have clear boundaries to adhere to with application of the Standard Operating Procedure from a covid perspective, as we also need to keep patients and staff safe from covid risk. 


What else would you like to share?

People with dementia will always struggle to articulate their needs, make decisions about care and treatment, and understand what is happening when coming into hospital for any appointment, planned treatment or acute admission in an emergency. 

Family members/carers are usually experts in that person's individual care needs, and know the person's limitations. It is therefore fundamental that they are with them as much as possible to help, reassure and contribute to decision making with the person with dementia. 

We provide the family member/carer with a lanyard to visit with, which gives them the visible permission to be there. 

 

Musician living with dementia writes song for research project - A Brave New World

A musician who has dementia has written an uplifting song to help support others living with the condition, as part of a major research project:

The IDEAL Programme – Improving the experience of Dementia and Enhancing Active Life – is an Alzheimer’s Society Centre of Excellence based at the University of Exeter. Led by Professor Linda Clare, a team of researchers have been working with a large number of people with dementia and carers living in the community to understand which things make a difference to the ability to live well with dementia.

Read more here...