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Orkney Dementia Strategy 2020–25 Summary

IMAGE: Cover photograph showing standing stones in a grassy Orkney landscape beside the sea. The cover text reads “Orkney Dementia Strategy 2020–25 Summary”. Logos at the bottom read “NHS Orkney”, “OHAC orkney health and care”, and “Orkney Islands Council”.

Why does Orkney need a dementia strategy?

Dementia can result from a variety of diseases and injuries that affect the brain, such as Alzheimer’s disease or stroke. Although dementia mainly affects older people, it is not a normal part of ageing and can affect younger people.

It can be overwhelming for people living with the condition and also for unpaid carers and families.

Orkney has a population of 22,000 people. Our population is living longer and this is something to be celebrated. Older people continue to make a significantly positive contribution to our communities. Unpaid carers provide many thousands of hours of care each year and should be valued as equal partners in care – experts in their own right. The Carers Trust reports that the care provided by unpaid carers in the UK each year is worth £132bn to the economy.

The number of people living with dementia in Orkney is set to double to around 800 people by 2041.

It is important that people living with dementia in Orkney, and carers, receive high quality support at the time they need it. We have a high percentage of older people on some of our most remote islands and so we need to develop innovative ways to support them.

We need a strategy that is:

  • designed with and for people with dementia and unpaid carers
  • safe, effective and focused on the person
  • delivered in a way that means everyone is working together to deliver the best services and support
  • committed to reducing inequalities and promoting equality

Clearly there is a medical aspect to dementia but in the dementia strategy we talk about ‘people’, not ‘patients’. We are adopting a social model of dementia as a disability, recognising the challenges people with dementia face and giving the same priority to eliminating barriers for them as we do for physical disabilities.

The strategy will run for five years, which will give us enough time to monitor progress as we deliver it and evaluate what it achieves.

How has the strategy been created?

We consulted widely to ensure that services are designed with and for people with dementia and unpaid carers. The development of the strategy has been completed in partnership with people with dementia, unpaid carers, and people from statutory and third sector organisations.

We listened to the views of local individuals and groups, held focus groups and conducted a survey.

The survey asked people:

  • what support or services have been helpful or positive
  • what was good about them
  • what could improve experiences and well-being for people with dementia and those who support them

In May 2019, the Life Changes Trust helped us host a three-day collaborative dementia learning event in Kirkwall. Storytelling sessions supported people with dementia and carers to talk safely and openly about their experiences of living with dementia.

Five key priorities emerged for people with dementia and unpaid carers:

  1. We want better information and support in how to access self-directed support.
  2. We want diagnosis to be delivered in a supportive way, in a familiar environment, with better access to post-diagnostic support.
  3. We want more emphasis on what matters to carers, both collectively and individually.
  4. We want better respite solutions, both planned and reactive.
  5. We want more emphasis on dementia friendly and dementia enabled communities.

These priorities echoed the findings of the focus groups and the survey. Overall, people felt that there needs to be far greater awareness about dementia across Orkney. The Dementia Strategy hopes to address all of these priorities.

What difference should the strategy make for people with dementia?

We want the strategy to make a real difference in the lives of people with dementia. If it doesn’t do this, the strategy will not have achieved its aims.

In the strategy we make 9 commitments to people with dementia:

  1. We will take an approach that respects your human rights and upholds them.

  2. We will review the ways in which we diagnose dementia so this happens in a supportive way. We will make sure you know how you can access appointments to discuss dementia and receive an assessment.

  3. Just now, everyone with dementia is entitled to one year of support after a diagnosis. We want to extend support beyond one year and so we will create a clear route for providing that support and will test it as it is delivered to ensure it works.

  4. We will work with a wide range of organisations to deliver innovative and flexible options for respite care.

  5. We will support you to live in your own home wherever possible and we will explore new and innovative solutions, including assistive technology.

  6. We will do our best to safely reduce ‘out of Orkney’ transfers and, where possible and appropriate, hospital admission will be avoided or reduced. If you must go to hospital, we will make sure that you are able to leave as soon as possible.

  7. We will make sure that every worker who helps support you because you have dementia has the proper knowledge and skills to do so.

  8. Allied Health Professionals (e.g. occupational therapists, dietitians) will be available to assist you in finding solutions and help you increase your independence and resilience.

  9. We will support Orkney to become a dementia friendly, inclusive place where you are valued and welcomed as part of your own community by your own community.

What difference should the strategy make for unpaid carers of people with dementia?

We also want the strategy to make a real difference in the lives of unpaid carers of people with dementia, such as family members and friends. If it doesn’t do this, the strategy will not have achieved its aims.

In the strategy we make 9 commitments to unpaid carers of people with dementia.

  1. We will take an approach that respects your human rights and upholds them.

  2. We will review the ways in which we diagnose dementia so this happens in a supportive way. We will make sure you know how you can access appointments to discuss dementia.

  3. We will fully involve you, as a carer, in the delivery of this strategy, recognising your vital role as a valued expert and equal partner in care, whilst recognising and supporting your own needs and well-being. We will establish a carers’ forum through the Dementia Carers Group to support the implementation of the Orkney Dementia Strategy. This will help us to understand and prioritise supports that will help carers to feel positive and supported to continue their caring role, where this is their wish, in any setting including hospital and care homes. We will support carers through anticipated and actual changes and transitions of care, recognising that this often involves a process of loss and grief.

  4. We will work with a wide range of organisations to deliver innovative and flexible options for respite care.

  5. We will support your caring role in your own home wherever possible and we will explore new and innovative solutions, including assistive technology.

  6. We will do our best to safely reduce ‘out of Orkney’ transfers and, where possible and appropriate, hospital admissions will be avoided or reduced.

  7. We will make sure that every worker who helps support you in your caring role has the proper knowledge and skills to do so.

  8. Allied Health Professionals (e.g. occupational therapists, dietitians) will be available to assist you in finding solutions and help you increase your independence and resilience and that of the person you are caring for.

  9. We will support Orkney to become a dementia friendly, inclusive place where you, as an unpaid carer of a person with dementia, are valued and welcomed as part of your own community by your own community.

How will we know if it is effective or not?

We will monitor our progress in meeting these commitments and will evaluate how they have made a difference for people living with dementia and unpaid carers.

We will do this in 3 ways.

  1. First, there will be a Dementia Steering Group that will be representative of all stakeholders and will support a grassroots approach. People with dementia and unpaid carers will be part of this group.

  2. Second, there will be an Action Plan that will set out targets for progress. The Dementia Steering Group will monitor progress and will provide regular reports to the Integration Joint Board.

  3. Third, the Life Changes Trust will help fund an evaluation of the Orkney Dementia Strategy. This will help with designing a performance management framework so we know what we should measure and what other information we should collect. This evaluation will be independent to the Orkney Integration Joint Board and so will give a level of outside scrutiny that will help us learn and grow.

Feedback

We would be very pleased to hear from you if you would like to provide us with feedback.

Please contact us using the following details:

Age Scotland Orkney

Tel: 01856 872438

Email: gilliancogh[email protected]

IMAGE: Closing photograph showing a rocky stone structure in the foreground, a sea loch, and a headland under a cloudy sky. It provides an Orkney coastal landscape context for the strategy.