Integrated Impact Assessments – The recommission of Dementia Young Onset Service in Edinburgh.

The recommission of Dementia Young Onset Service in Edinburgh.

Minor changes in contract specification and potential change of provider of Young Onset Service in Edinburgh.

Feedback on the current Young Onset Service in Edinburgh was sought. This included a targeted approach to seek the views from people with a dementia diagnosis under the age of 65 that currently use the service. In addition to this key service providers from a range of teams and stakeholders were also consulted on strengths and weaknesses of the current service.

Those with a diagnosis of dementia were invited to attend focus groups as part of an established group session, this was held face to face. Questionnaires were issued to users of the service unable to attend in person.

Service users were asked broad questions regarding their experience, specially what worked well, where improvements could be made, and if there were any specific gaps in services or barriers to delivery.

In order to capture their experiences those with lived experience and their carers were asked the following questions:

  • How helpful or unhelpful the support has been.
  • What works well.
  • What could be better.
  • Whether one to one or group support is more useful.
  • What days of the week are best to receive support, including Saturday and Sunday.


Lived experience focus group, from:

Service users: Alzheimer Scotland Young Onset Service

Lived experience questionnaire responses, from:

Service users: Alzheimer Scotland Young Onset Service



23 August 2022

Name Job Title Date of IIA training Email
Sarah Bryson


Strategic Planning and Commissioning Officer, EHSCP Nov 2016
Michael Edwards (Report writer) Strategic Planning and Commissioning Officer, EHSCP
Clare Wallace Community Dementia Nurse, OPMH CMHT North
Sarah Linklater Community Dementia Nurse, OPMH CMHT South
Gemma Conway Community Dementia Nurse, OPMH CMHT South
Derek Todd Strategic Planning and Commissioning Officer, EHSCP
Evidence Available? Comments: what does the evidence tell you?
Data on populations in need Yes. In 2019 it was estimated 281 people under 65 years were living with dementia.[1]

It is important to note that as with dementia generally there is conflicting information [2] regarding the prevalence of young onset dementia this is partly due to low awareness and the difficulties of getting a diagnosis for people of working age. The impact of dementia for younger people and their families is different, although younger people experience similar symptoms to older people with dementia, the impact on their lives and the subsequent provision of support needs to take into account that people may still be in employment, have responsibility for caring for children and for dependent parents too and have significant financial commitments.[3]


The overall population projections of people living with dementia of any age in Edinburgh, indicates that by 2024, there will be a total people 8,819 and in 2030 total people 10,019 living with dementia.

Data on service uptake/access Yes Range of activities and numbers were impacted by Covid 19 however activities are slowly returning to pre-covid levels. There are currently no waiting lists for the services currently provided.
Data on equality outcomes No This will be subject to further development and monitoring within this contract as outlined in section 14, including taking account of any future national developments as outlined in Scotland’s new National Dementia Strategy.

literature evidence

Yes Scottish Government Scotland’s National Dementia Strategy 2017-2020 Edinburgh

Edinburgh Health and Social Care Partnership Edinburgh Health and Social Care Partnership Strategic Plan 2019-22

Scottish Government Estimated and Projected Diagnosis Rates for Dementia in Scotland:2014 -2020

Scottish Government. Promoting Excellence Framework: A framework for all health and social care staff with people with dementia, their families and carers .

UK Government Equalities Act 2010 Guidance.

Scottish Government NHS Health Scotland – Dementia and Equality – Meeting the challenge in Scotland

Scottish Government See Hear Strategy

Scottish Government The Carers (Scotland) Act 2016

Scottish Government Social Care (Self-directed Support) (Scotland) Act 2013

Alzheimer Scotland Charter of Rights for People with Dementia and Their Carers 2010

Scottish Government Standards of Care for Dementia in Scotland June 2011

Public/patient/client  experience information Yes – review findings As outlined on page 1. To make improvements in the service that take onboard feedback from service users.
Evidence of inclusive engagement of service users and  involvement findings Yes – review findings Feedback directly from current service users informed the review and findings will inform the new service specification including continued emphasis on gathering regular service user and carer feedback.
Evidence of unmet need No Contract monitoring and performance measures will continue to take cognisance of this by comparing expected and actual numbers of people being supported.
Good practice guidelines Yes The provider of the Young Onset Service should meet the principles and standards within the Charter of Rights for People with Dementia and Their Carers 2010, Standards of Care for Dementia in Scotland June 2011. These will be reflected within the service specification and performance measures framework.
Environmental data Yes The importance of dementia friendly communities to support people living with a dementia diagnosis, awareness raising and dementia training are strongly linked to dementia support as outlined in Scotland’s National Dementia Strategy 2017-2020.
Risk from cumulative impacts No
Other (please specify) The new service specification for the Young Onset service will clearly outline compliance requirements related to The Equality Act 2010 and any successor legislation, advice and best practice guidance issued. It will also detail contract monitoring requirements to regularly involve and consult with people who have a dementia diagnosis and those who support them to inform service delivery and development.

Ongoing work and discussions should be equitable across all groups with protected characteristics and include people diagnosed in acute hospital wards, care homes and in employment.

Additional evidence required No

[1] Edinburgh Integration joint Board – JSNA Paper – Dementia

[2] Facts and figures – Dementia UK

[3] Facts and figures – Dementia UK

Equality, Health and Wellbeing and Human Rights



·       The service will continue to be accessible, appropriate, inclusive and sensitive to the needs of those with protected characteristics. The recommissioning of this Service will not change this position.

·       The focus of Young onset is primarily on those under 65, where there is often added complexity to the illness, and in their life circumstances, as they are more likely to be in work, have younger children, and significant financial commitments such as mortgages.

·       The service will work with referrers/professionals to increase their awareness of the service and improve pathways between service diagnosis and support for those with dementia and their carers.

·       Information and advice with employment issues and assistance and support to access other services will be provided.

  • Younger people may be more likely to speak English as a second language. Although this will impact all dementia services more as time goes on. Additionally it may affect a higher number from different cultural backgrounds.  Information will be provided in a format or language that is right for the person.

·       The service will ensure clear pathway for those with sensory loss, and appropriate communication methods will be promoted to ensure that people who require this can be included and supported.

·       The contract will primarily focus on the person with a dementia diagnosis, however referral for carer’s assessment and referring on to carers’ organisations is also a core part of the service.

·       The service will ensure staff/volunteers operate at skilled or enhanced level dementia training within the Promoting Excellence Framework as appropriate



·       Neutral

Affected populations

All people with protected characteristics and wider population groups as identified through IIA.

Dementia is an illness associated with age – young onset skews to late 50s and 60s. Therefore there are higher incidents for protected characteristics correlated with age, meaning compared to the overall population:

·       Higher diagnosis amongst women;

·       Higher proportion of those diagnosed have a physical disability, especially related to mobility.

Due to the way the illness progresses, its affects may be greater for those whose first language is not English as they may not be able to retain languages.

Environment and Sustainability


·       The service will help service users to make/maintain community connections and support dementia friendly community developments.

·       Public Safety – it is a requirement for Adult Protection and Adults with Incapacity training. Appropriate policies and procedures should be in place including PVG, staff supervision, disciplinary procedures, lone working either by specifying this through the terms and conditions, service specification or contract monitoring.

·       Public safety – the Service will raise awareness and support people to minimise risks associated with dementia through day to day service delivery through information on services available and future planning such as fire safety, risk of getting lost.

·       Infection control – staff are expected to comply with the requirements of controlled environments eg. Hospitals.

·       Sustainability – A person-centred approach to building resilience and supported self-management strategies to live well with dementia at an early stage in their illness is part of the ongoing service delivery.



·       Neutral


Affected  populations

All people with protected characteristics and wider population groups as identified through the IIA.



  • Raising awareness of welfare benefits entitlement following diagnosis and applying for Power of Attorney.

·       Community Benefits will be a requirement of this contract which may include volunteering opportunities.



·       Neutral


Affected populations

All people with protected characteristics and wider population groups as identified through the IIA.


This service will be provided by a third sector provider.  All equality, human rights, environmental and sustainability issues are either in the service specification or the contract terms and conditions.

If yes, it is likely that a Strategic Environmental Assessment (SEA) will be required and the impacts identified in the IIA should be included in this.


If further evidence is required, please note how it will be gathered. If appropriate, mark this report as interim and submit updated final report once further evidence has been gathered.


Follow up actions will be progressed as per the report (see section 13)


Specific actions (as a result of the IIA which may include financial implications,  mitigating actions and risks of cumulative impacts) Who will take them forward (name and contact details) Deadline for progressing Review date
Oversee communication of changes to service by the contracted provider. Michael/Edwards/Sarah Bryson/Vivienne Kennedy Ongoing – as part of the procurement process March 2024
Liaise with and use specialist services when required, for example interpretation services and sensory impairment services. To be outlined in service specification and contract monitoring. Michael Edwards/Sarah Bryson/Vivienne Kennedy Ongoing as part of the service specification development process December 2022 and ongoing
Staff induction to be broad and include equalities. Michael Edwards/Sarah Bryson Ongoing as part of the service specification development process December 2022
Promotion of service by provider to specific population groups identified in section 7. Including close links with other relevant voluntary sector services essential to promote equality of service provision for all users. To be outlined within service specification and contract monitoring. Provider when contract formally awarded Ongoing December 2022
Role of supporting dementia friendly community developments as arise,  linked to developing person-centred individual community connections to be included in service specification. Michael Edwards/Sarah Bryson Ongoing as part of the service specification development process December 2022

The IIA is for the recommission of the service through which young onset support is delivered in Edinburgh. A robust contract monitoring framework will be put in place alongside the revised service specification and service contract which will routinely monitoring how the service is delivered to different population groups, including people with protected characteristics.

Name: Katie McWilliam, Strategic Programme Manager – Older People, Dementia and Carers  Edinburgh Health and Social Care Partnership