Dementia care addition , throughout the programme , participants may be provided with handouts .
Dementia care addition , throughout the programme , participants may be provided with handouts .
Originally these were provided in a hard back A4 folder , but some participants advised that once at home there wasn ’ t anything identifying what was in the folder and they forgot to look inside . The A4 hard back folders have now been replaced with a clear fronted plastic folder , so the contents can be seen easily at a glance .
In discussion with the Admiral nurse lead , we explored opportunities for the START ( STrAtegies for RelaTives ) group and Journey through Dementia programme to run in parallel , in terms of venue and time , where possible .
This would enable carers appropriate for the START group to travel with their loved one , so that they could both attend their respective groups . Previously , some carers had identified concerns at leaving their loved one at home alone while they attended a START group . This is still being trialled .
The Journey through Dementia programme manual exists to guide the facilitation of the group , while maintaining integrity to the process . However , not all OTs have experience in group facilitation . It became evident that one facilitator was reliant on outside speakers and while this can be beneficial , it detracted from the focus on occupation and the development of skills .
The programme is not for everyone . In 2022 , 55 people were invited but declined to participate in the group . In 2023 , this figure increased to 88 people . Reasons given include :
• still processing their diagnosis
• not the right time for that individual in their dementia journey
• they don ’ t like groups
• other commitments , including appointments for co-morbid physical conditions
• no transport or support network available to access the group .
How the Journey through Dementia programme is introduced to potential participants was reviewed as a result , as it became evident that a higher incidence of declining was prevalent in one geographical area , compared with others .
In addition , an introductory leaflet about the programme was created and is now given to potential participants .
In North Carmarthenshire , the programme is facilitated in two venues , to allow greater geographical access and participants are given the option of attending whichever is nearest or easier for them to get to .
Ultimately , feedback from participants remains a powerful way to share the benefits of the
Journey through Dementia programme and people have told us : ‘ It was helpful to meet other people who have similar problems ’; ‘ My loved one has looked forward to this group every week , it ’ s become an important part of their routine ’; and ‘ I read the handouts and have started using some of the strategies … writing things down has been helpful … the tips for remembering names will be helpful ’.
Other feedback received includes : ‘ I really enjoyed meeting people with the same condition as me . I was very interested in their experience of dementia and enjoyed listening to how they coped with it . I felt that the course had prepared me for the future and thoroughly enjoyed the sessions ’; and ‘ Doctors don ’ t tell you how to live with it [ dementia ] but this group does .’
The Journey through Dementia programme continues to form part of a package of postdiagnostic interventions offered by Dementia Wellbeing Community Team OTs .
It was always the intention that this work would be taken on and adapted by occupational therapists to meet the needs of the local population . In this respect , it continues to evolve in collaboration with and by people living with a diagnosis of dementia .
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Shearsmith-Farthing K ( 2020 ). Journey through Dementia – an occupation focused , personcentred , non-virtual group . Occupational Therapy News , 28 ( 10 ): 52-53 .
Sprange K , Mountain GA , Shortland K , Craig C , Blackburn D , Bowie P , Harkness K , Spencer M ( 2015 ) Journeying through Dementia – a community based self-management intervention for people aged 65 years and over : A feasibility study to inform a future trial . Pilot and feasibility studies . 1:42 , DOI 10.1186 / s40814-015- 0039-6 .
Words KAREN SHEARSMITH-FARTHING , Advanced Practice Occupational Therapist and Dementia Lead , with co-author JESSICA DeNICOLA , Occupational Therapist and Journey through Dementia Lead , Hywel Dda University Health Board karen . shearsmith-farthing @ wales . nhs . uk
May 2024 OTnews 25