Research has shown that people with young onset dementia need advice, support and information to stay independent. Jacqueline Hussey and Gill Stokes report on how a pilot online education course did exactly that.
Young onset dementia affects adults under the age of 65 and nationally there are approximately 43,000 affected individuals within this age group (Alzheimer’s Society 2014). Traditional services are designed to meet expected therapeutic outcomes in older adults and access to services for younger adults with dementia is limited.
Psychoeducation is an evidence-based therapeutic intervention which integrates emotional and motivational aspects with relevant, up-to-date information about the diagnosis and treatment of the individual’s condition. We will summarise a novel psychoeducational intervention for newly diagnosed patients with young onset dementia (YOD) in Berkshire, which aims to help them better understand their condition and learn about the support available to them.
In those places that do offer it, psychoeducation tends to be provided for carers and relatives rather than the person with the lived experience of dementia. People living with dementia can often be excluded from decisions about their care or are simply not given information. While the European Rhapsody study showed the benefits of an online information programme for carers of people with young onset dementia, there are few services that provide tailored education which addresses the different needs of younger people with dementia themselves (Metcalfe et al 2019).
The Angela Project, a national study of people living with YOD, identified the need for young onset-specific advice, support, and information for people to remain independent (Stamou et al 2020). People with YOD and their families reported that traditional community services failed to meet their personal and psychological needs (Cations et al 2017). The Younger People with Dementia – or YPWD (Berkshire) charity – was created in 2012 to address the gap in dementia services for families of working age living with the condition.
YPWD (Berkshire) is contracted by Berkshire West and East Berkshire Clinical Commissioning Groups (CCGs) to deliver annual psychoeducational courses to small groups of newly diagnosed patients with YOD. The education course is traditionally held as a face-to-face group but due to Covid-19 restrictions in 2020/21 we decided to adapt the programme’s format to the online platform Zoom. We then evaluatedthe effectiveness and potential benefits of this mode of delivery.
The primary aim of the course was to help patients with YOD better understand their condition and to learn about the range of information and support that is available to them. The programme took place on the same afternoon each week over five consecutive weeks:
- Week one: Getting together (setting the course objectives and getting to know each other)
- Week two: Understanding your symptoms
- Week three: How others can support you
- Week four: Keeping active with a focus on YPWD activities and workshops
- Week five: Looking after yourself.
Participants’ partners or caregivers were offered a parallel online carers’ education course which was delivered by NHS clinicians and practitioners during the same timeframe. The carers’ course incorporated more in-depth educational content while echoing the same themes as the patients’ programme.
Both these education programmes broadly describe the different forms of dementia and their symptoms, pharmacological and psychosocial therapies (for example, cognitive stimulation therapy, YPWD activity-based workshops, cholinesterase inhibitor medications), communication, research, legal issues, support, and self-care strategies.
The course for people with YOD placed an emphasis on enablement and ability, and the theme of personhood was reiterated in the introductory and closing sessions with the use of the Kitwood flower diagram (Kitwood 1997).
Nine people commenced the course and between six and nine attended each week. Six of the attendees were male and three were female. Their ages ranged from 49 to 65 years, with an average age of 61.3 years. Six attendees had a diagnosis of Alzheimer’s dementia, two had frontotemporal dementia and one had vascular dementia with frontal predominance.
Since the course was online, attendees were able to join from a wide geographical area: West Berkshire, Reading, Wokingham, Maidenhead and Slough. Our aim was to make the most of the opportunities arising from the online format (see box).
Staff made written observations about the attendees throughout the sessions. Feedback was collected verbally at the end of each session to capture feedback in the “here and now”. A semi-structured questionnaire was sent at the end of the programme for carers to complete with course attendees, which included their perceptions of family members’ response to the course.
There was a low dropout rate during the five-week programme – one participant even joined us while she was on holiday in the Scilly Isles!
Common feedback themes captured at the end of each session were that it was good to meet others in the same situation; that people found it helpful to know more about their condition; that they felt less fearful about their diagnosis; that they found it enjoyable and empowering; and that they “would be lost without it.”
Feedback from the semi-structured questionnaire showed that attendees were happy, they felt the time of the course in the afternoon was convenient and they found the course summaries either “helpful” or “very helpful”, with one individual feeling “unsure”. A majority (60%) reported that the 90-minute duration of the course sessions was “about right” and 40% reported that it was “too long” for them.
It is possible that reliability of feedback lessened as attendees’ recall of the course may have declined over time, but the feedback also gained carers’ views of the impact of the course. Most carers reported that they helped their relative or partner set up online and one stayed in the room at a distance in case there were any IT problems, but one attendee independently managed all the IT tasks.
A reflexive thematic analysis showed that people diagnosed with young onset dementia develop a fear of “losing control over oneself”, shame and a fear of becoming a burden (Busted et al 2020). They often do not get the opportunity to share their thoughts about their care and treatment.
Throughout the online course, the facilitators were surprised at participants’ depth of discussion and honesty about their diagnosis of dementia. The content of the sessions prompted discussion about the emotional and practical impact of their diagnosis. They could relate to each other because they were of a similar age and had shared themes of loss, such as employment.
Attendees also bonded over common interests and reminiscences of certain genres of music, and growing up in the late 1960s and 70s. As a staff group, we observed camaraderie, mutual support, and high levels of engagement.
There were some IT issues (on both sides). Despite this, we were impressed with the patience and level of engagement of participants and with how well they coped with the remotely presented sessions.
Delivery of an online education course for younger people with dementia was a positive experience for attendees and those delivering the course. This mode of delivery may have worked well because of the younger age of the group with dementia, most of whom had previous experience of using smartphones and computers.
While there are clear advantages to running psychoeducation groups face to face, there are few services available for people with young onset dementia nationally and, where there are, people must often travel out of their local area to access them. Online delivery made the course more accessible to a group who are geographically dispersed.
Provision of online psychoeducation for people diagnosed with young onset dementia can help to increase knowledge through shared learning but importantly can reduce marginalisation and provide a sense of empowerment.
Alzheimer’s Society (2014) Dementia 2014: Opportunity for Change. London: Alzheimer’s Society.
Busted l, Nielsen D, Birkelund R (2020). “Sometimes it feels like thinking in syrup” – the experience of losing sense of self in those with young onset dementia. International Journal of Qualitative Studies on Health and Well-Being 15(1) 1734277.
Cations M, Withall A, Horsfall R, Denham N, White F, Trollor J et al (2017). Why aren’t people with young onset dementia and their supporters using formal services? Results from the INSPIRED study. PLoS One, 12(7), e0180935. doi:10.1371/journal. pone.0180935.
Kitwood T (1997) Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press.
Metcalfe A, Jones B, Mayer J, Gage H, Oyebode J, Boucault S, Aloui S, Schwertel U, Bohm M, du Montcel S, Lebbah S, De Mendonca A, De Vugt M, Graff C, Jansen S, Hergueta T, Dubois B, Kurz A. (2019). Online information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot study. International Journal of Geriatric Psychiatry, 34(10),1455-1464.
Stamou V, La Fontaine J, Gage H, Jones B et al (2020) Services for people with young onset dementia: The ‘Angela’ project national UK survey of service use and satisfaction. International Journal of Geriatric Psychiatry 36(3) 411-422.
Dr Jacqueline Hussey is a consultant old age psychiatrist in Wokingham Berkshire Healthcare Trust and trustee of YPWD Berkshire. Gill Stokes is a dementia project worker with YPWD Berkshire.
Activity photos reflect work of the YPWD Berkshire charity