New dementia strategy for Scotland: Everyone's Story

Principles

In developing the strategy, and as we implement it, we will:

Promote and monitor inclusion, building working relationships with those who have previously felt excluded from the dementia community including people with a comorbidity such as Parkinson’s disease, people with Down’s Syndrome or a learning disability, minority ethnic communities, those for whom English is not their first language, people with hearing or sight loss, lesbian, gay, bisexual and transgender/transsexual (LGBT)+ communities and marginalised communities throughout Scotland.

• Monitor the impact of the strategy on groups that face additional barriers
• Continue to be informed by evidence and research about dementia
• Collate, analyse and publish data on the impact of the strategy
• Continuously listen, learn and adapt to the changing environment the strategy seeks to deliver within
• Strive to promote and uphold Human Rights Principles through everything we do alongside our partners, including how we influence the education, training and professional development of the workforce
• Take a human rights-based approach through the dementia journey and for all types of dementia.

These guiding principles are set out in the internationally recognised PANEL approach^[5]:

Participation

Everyone has the right to participate in decisions which affect them. Participation must be active, free, and meaningful and give attention to issues of accessibility, including access to information in a form and a language which can be understood.

Accountability

Accountability requires effective monitoring of human rights standards. For accountability to be effective there must be appropriate laws, policies, administrative procedures and mechanisms of redress in order to secure human rights.

Non-discrimination and equality

A human rights-based approach means that all forms of discrimination must be prohibited, prevented and eliminated. It also requires the prioritisation of those in the most vulnerable situations who face the biggest barriers to realising their rights.

Empowerment

People should understand their rights, and be fully supported to participate in the development of policy and practices which affect their lives. People should be able to claim their rights where necessary.

Legality

The full range of legally protected human rights must be respected, protected and fulfilled. A human rights-based approach requires the recognition of rights as legally enforceable entitlements, and is linked in to national and international human rights law.

The UN Convention on the Rights of Persons with Disabilities (UNCRPD)^[5] builds on and expands the European Convention on Human Rights (ECHR)^[6] with regard to disabled people. This strategy seeks to uphold the Convention on the Rights of Persons with Disabilities (CRPD) Articles with particular detail relating to:

• The same access to quality health services as other people
• Community services and facilities are available on an equal basis
• Supported decision-making, as opposed to substituted decision-making
• Choice and control about where people live and an equal choice to both an inclusive life and access to support services where they live
• The right to independent advocacy including in relation to future care planning.

Ron’s Story

Click Here for Ron’s Story

Ron talks about his experience when he was first diagnosed and how meeting other people with dementia made a difference and Karen talks about all the creative work Ron has been doing since.

My name is Ron and I live on the Isle of Lewis in the Outer Hebrides. I was diagnosed as having a cognitive impairment over four years ago. My last psychiatrist was in the process of deciding whether my dementia was vascular or Lewy bodies when he left and my new psychiatrist is starting from the beginning, my third start.

This has left me with a real interest in how the system addresses dementia in the Pre-Diagnostic phase, the one year post diagnostic support phase and more importantly what happens when the one year is over. I have written two plays about dementia and made a number of videos with my partner about living with dementia.

I am the chairperson and a founding member of Deepness Ltd, an organisation where 9 of our 12 board members are people living with dementia. Deepness set up Deepness Dementia Radio, an online radio station for people with dementia by people with dementia. We currently have 220,000 listeners per year and growing. I believe that by joining this panel I will be able to contribute both critically and positively to our dementia community.

Equalities

In developing this strategy we met with, talked to and heard from hundreds of people across Scotland who are affected by dementia. We heard the unique ways younger people are affected by a diagnosis; how addiction exacerbates dementia for those affected; the difficulties faced by people with sensory loss including from the deaf community and those with sight loss, and how people with a learning disability or Parkinson’s disease can feel excluded from the dementia community that has developed and grown its voice in Scotland.

65% of people living with dementia are women. 60%-70% of those caring for someone with dementia are women and women are more likely to care for someone for more than five years than men are^[7]. Women, particularly those who are caring for someone, told us about the assumptions made that they would adopt the main caring role resulting in the loss of their own identity, careers and financial security. Evidence, beyond age factors, about why women are more likely to develop dementia is growing and we will reflect this as the strategy is delivered.

However, we know there are voices we didn’t hear enough from, especially those from minority ethnic communities, and we are committed to addressing this through improved connections with community organisations.

Through the life of this strategy, we will have an enhanced focus on equalities issues, working with others to help to minimise the structural barriers to participation, diagnosis, treatment, support and care, regardless of ethnicity, race, sex, gender reassignment, sexual orientation and additional disability or neurodivergence. We include a focus on economic disadvantage and the specific issues for remote island and rural communities.