Dementia care
Karen Shearsmith-Farthing and Jessica DeNicola evaluate the ongoing impact of a dementia programme on people ’ s health and wellbeing and how listening and learning from participants is helping the programme to evolve .
Dementia care
Feature
A journey through dementia
Karen Shearsmith-Farthing and Jessica DeNicola evaluate the ongoing impact of a dementia programme on people ’ s health and wellbeing and how listening and learning from participants is helping the programme to evolve .
T he ‘ Journey through Dementia ’ programme was designed by people living with dementia in collaboration with occupational therapists . It ’ s a structured , menu-led , post-diagnostic group , concerned with the meaning and purpose that people place on occupations and activities , and how dementia impacts on their ability to do the activities they need and want to do .
The programme is an occupation focused , person centred , closed group that provides participants with a safe space in which to explore their thoughts and feelings about living with dementia , share and develop compensatory strategies to enable ongoing engagement in meaningful occupations and to challenge preconceived ideas about what people living with dementia can achieve ( Sprange et al 2015 ). Back in October 2020 , we published how Hywel Dda University Health Board became the first in Wales to introduce the ‘ Journey through Dementia ’ programme ( Shearsmith-Farthing 2020 ). It is just one post-diagnostic intervention provided by OTs that sits within the West Wales Dementia Wellbeing Pathway .
Since then , we have listened and learnt from participants . The group has evolved and now includes a pre- and post-evaluation framework , which captures the impact of this complex intervention . It has generated a lot of interest amongst OTs across the UK and we would like to share this with you .
Programme and participants
Facilitated by an OT and an OT technician , within Hywel Dda University Health Board the programme is offered over a period of 12 weeks , meeting once a week in a community venue for two hours each session .
The community venue is important as a key element of the intervention is the transfer of practice and rehearsal of skills in and with the participant ’ s community .
The Dementia Wellbeing Community Team OTs use each session to support and prepare the group to establish community links and access to local and national resources and advice .
The group is primarily for people living with a diagnosis of dementia . Reviews with participants following their engagement in the programme have highlighted that people living with dementia greatly value the opportunity to attend a group of their peers without their family member present .
For this reason , carers and family members are invited to attend at key points during the programme – the beginning , middle and end – and numbers are limited to 12 participants each programme , so that if carers attend , no more than 24 people are taking part at any one time .
The OTs identify potential participants . A service specification was developed by the author and outlines an inclusion / exclusion criteria , but inclusion / exclusion is not dependent upon the participants ’ cognitive assessment score .
A degree of insight and comprehension is necessary and the OT will conduct a meaningful contact with the potential participant to ascertain if the group will be of benefit to them . At this time , the OTs are only able to accept referrals to the programme via their Memory Assessment Service or Admiral Nurse Team colleagues . Participants have regularly stated that they wish they had been able to access the programme earlier in their dementia journey ; a key matter for consideration if we are to optimise the effectiveness of post-diagnostic support .
As and when resources allow , it is hoped that participants may be referred to the programme via their GPs , other AHPs with whom they are involved , and Alzheimer ’ s Society advisers .
Programme content
The content of ‘ Journey through Dementia ’ is framed around five themes : enhancing daily living ; adapting the everyday environment ; maximising psychological wellbeing ; maximising
22 OTnews May 2024