Cardiff and Vale Young Onset Dementia Service has been developed over last five years. Through service re-design and a Health Board supported business case, a full multi-disciplinary team is now available to meet the needs of people diagnosed with dementia before the age of 65, as well as their carers and families. A range of age appropriate post-diagnosis therapeutic opportunities are now available locally, together with specialist clinical review and care coordination including access to day and in-patient services for people with complex or challenging presentations. A dedicated inpatient unit for people with continuing healthcare needs has also been developed.
Prior to this service development, people with young onset dementia received a service from old age community mental health teams. Many of the expected 289 people under age 65 with dementia locally were previously unknown to services (prevalence 2,200 in Wales; 42,325 in wider UK). In 2011 the National Dementia Vision allocated funds to each Welsh health board, to initiate service developments.
In 2012-13 a business case was developed to build on initial appointments of a dementia care advisor and 1.6 wte family support workers (alongside realigned pre-existing 0.5 wte consultant nurse and 0.5 wte consultant psychiatrist sessions), by recruitment of a full multi-disciplinary team, including therapy and psychology posts, and the development of a dedicated inpatient unit (with improved staffing ratio and skill mix).
To fund service development, a number of clients were repatriated from external continuing healthcare placements (externally placed because no specialist dedicated age appropriate environments were available locally and younger more active people can pose significant risk to elderly frail inpatients) to a developing 10 bedded inpatient unit for extended psychiatric assessment. In addition to repatriated funds, the health board was agreeable to develop the service around cost avoidance.
Through 2013-15, phased recruitment took place based on financial planning. The full multi-disciplinary team was in place by the end of 2015 and operational policy and clinical care pathway development completed end 2016. Service modelling with team awaydays aimed at prioritising developments continued across the start up period.
A clear focus was on developing service components aimed at facilitating meaningful engagement with clients, carers and families. Subsequently the service is proud to offer a range of therapeutic opportunities including post diagnosis support group, cognitive stimulation therapy groups (x3), walk and talk group, and carers groups for partners and adult children. Individualised activities are also available, including community engagement sessions with family support workers and therapy technician supported gym sessions.
Specialist clinical review takes place at monthly out patient clinics and clients with secondary mental health care needs can access specialist care coordination under the Mental Health Measure (Wales), with care and treatment planning supported by contact with day hospital and acute mental health assessment inpatient facilities as necessary. The service works in partnership with the Alzheimer’s Society and an information and support officer is a valued member of the team. Links with Ty Hapus Younger Onset Day Service and Gwalia DIAL (befriender) projects are also strong.
First full year operations realised net cost savings of £133k and cost avoidance (external placements) of £457k. The total £590k saving was after staff costs of £258k. Increase in referral rate, with young onset dementia caseload standing at 130 (18.05.2017). Before project initiation the figure was 27 (18.05.2011). Additional 31 deaths/9 discharges recorded in start up period. As the service is non age discriminatory 39 of the 130 clients are now over age 65. A further influx of referrals towards the 289 prevalence figure is anticipated, which will necessitate further growth. A client/carer satisfaction survey found a 92.5% positive rating.
Cardiff and Vale is the only health board in Wales with a full dedicated specialist young onset dementia multi-disciplinary team and inpatient beds within a dedicated unit. It is thus an exemplar of best practice. One of the reasons for this nomination is to achieve wider recognition of the Cardiff and Vale model. Whilst several presentations at conference have been well received, we now need to publish our work and show what can be achieved with modest investment and service redesign. (A client story has recently been accepted for publication in the journal of dementia care.)