Dementia

ARK provides specialist dementia services for people with learning disabilities, including tailored accommodation and support for the person and their family.

Although there are many services and resources for people with dementia in Scotland, there is a lack of specialist dementia care for people who also have learning disabilities, and the services needed are very different. There are many reasons for this, including:

• People with learning disabilities tend to be younger when they develop dementia
• People with learning disabilities may already have health issues and problems with communication and understanding
• People with learning disabilities and dementia may be moved to nursing homes where their specific needs are unlikely to be met

There is an increased risk of developing dementia, particularly Alzheimer’s disease, if a person has Down’s syndrome. By age 60, 55% of people with Down’s syndrome will have developed dementia.

The number of people with learning disabilities other than Down’s syndrome who also have dementia is also approximately 2-4 times higher than the general population.

How ARK Can Help

Our aim is to provide homes for life and many of ARK’s service users have been receiving support from us for over 20 years.

We have developed specialist services for people with learning disabilities and dementia in order to enable people to remain in their home for life with specialist, person-centred support that will:

• Respond to their changing needs
• Increasing and maintaining their quality of life
• Ensure people with learning disabilities are afforded the opportunity and the right to live full, meaningful and comfortable lives with dementia

ARK’s first specialist service in St Andrews opened in October 2013. We also have specialist services in Edinburgh and Buckie in Morayshire.

Accommodation Options:

There are three accommodation options for people with learning disabilities who develop dementia:

• Ageing in Place - The person remains in their current home with the necessary environmental adaptations. Staff can receive appropriate training to continue to meet changing needs.
• In Place Progression - The person moves to a specialist service providing dementia friendly accommodation. Staff with specific specialist training, skills and experience provide support.
• Referral Out - The person moves to a generic nursing or residential care home.

‘Ageing in Place’ is considered the best option for people with learning disabilities and dementia, however the financial commitment required to provide this option may make it unaffordable.

‘In Place Progression’ is considered a good mid to long-term future option. By moving to a specialist facility offering staff with specific training and skills and dementia friendly accommodation, enables individuals to remain in this accommodation for the rest of their lives.

ARK can provide help with both ‘Ageing in Place’ and ‘In Place Progression.'

Support Based on Expert Advice

We have worked in partnership with Dr Karen Watchman of Edinburgh University, who provided specialist advice, guidance and support on the design of the environment.

She has also provided person-centred training for ARK staff in supporting people to live well with dementia, providing palliative care and the importance of life history work.

Helping People with Learning Disabilities to Live Well with Dementia

ARK’s two unique services provide the opportunity for people with learning disabilities and dementia to live well with dementia by providing:

• A dementia friendly environment
• A quality of life, enhancing self-esteem and maintaining relationships with others
• A home for life and support to end their life at home
• Staff with specialist knowledge and skills about learning disabilities and dementia
• On-going learning and development opportunities to keep up with best practice
• Person-centred support that will respond flexibly to the person’s changing needs
• Support to participate in activities that are meaningful to the person based on life history work

Design of the Environment

In order to create an environment where service users can feel safe and secure and maintain their abilities and independence for as long as possible, the following areas were important:

• A layout that allows service users could find their way around easily
• Simple, ‘dementia-friendly’ decor and furnishings to make it easier to make sense of the environment
• Glass doors on kitchen cupboards and the fridge so service users can easily see what’s inside
• Good lighting so people can see where they are going and what they are doing - as well as controlling glare and shadows that may be distressing
• Special beds so service users can get in and out of bed independently
• Bathrooms that are comfortable and homely and enable the maintenance of continence
• Ensuring the environment is quiet and calm but also suitably stimulating          

Staff Learning and Support

Staff have training in all aspects of providing care and support for people with Learning disabilities (LD) and dementia. The most important factor for staff is the opportunity for on-going learning and opportunities to put their skills into practice to meet the changing, individual needs of the service users.

ARK’s specialist services are provided by dedicated teams of staff so it is important
that staff are supported to
keep them well educated and motivated. ARK has staff with specialist knowledge and skills
in LD and dementia to provide on-going learning and support for staff.

Meaningful activities and social interaction

Staff identify meaningful activities for service users using life story work and input from their family. Keeping service users’ active, interested and enjoying life is very important to staying well physically and emotionally. An example of this was Sam who enjoyed gardening throughout his life and always had a beautiful garden. He worked for his local authority for many years and although he was no longer able to carry out heavier tasks, gardening remained a meaningful activity for him. Staff supported Sam to pot plants and tend the planters on his balcony. He also enjoyed the animals who visited his balcony to eat the nuts he left out.

Working with families

Learning from families and welcoming their contribution to the care and support of their loved ones is important to the on-going health and well-being of our service users. The continuity of these most important relationships enables the best outcomes for service users.

Palliative and end of life care

For ARK, a palliative care approach is
about enabling our service users to maintain and increase their quality of life in order to enjoy every day of their lives. We are also committed to
supporting our service users to have the best possible end to their life at home, comfortably and surrounded by the people they love and who love them - if this is what they and their family wish. This means having excellent working relationships with community health services and planning for the best end of life care for each individual.

We’ve received feedback from service users and their families that our specialist care has helped to make their lives more comfortable and meaningful. (*can we find a testimonial?*)

Case Study

Alan has Down syndrome and dementia. He has lived at ARK’s St Andrews accommodation for 25 years where he shared his flat with four other people with learning disabilities.

As Alan’s illness progressed, the unsuitability of the environment and sharing with others impacted on Alan, and his distress at times has been displayed as aggression and violence.

Alan has had to cope with hallucinations and delusions, which often leave him in tears. He has also suffered deterioration in his mobility. Alan had a lack of understanding of the changes he was experiencing, and sometimes blamed others when incidents have occurred, such as his flatmates or staff at the service.

ARK dealt with this by putting full-time one to one staff support in place for Alan and in January 2013 we helped him move into his own flat, which was designed along ‘dementia friendly’ principles. Almost immediately the quality of his life has improved.  Alan has a programme of meaningful activities that are stimulating and engaging for him, and he is out and about in St Andrews almost every day. This is very important to Alan as he is well known in the community and as a result he feels valued and accepted.

Alan now feels comfortable and safe in his environment. It’s quiet, there are no surprises, and he knows where things are. There have been no incidents of aggression or violence since Alan moved, and with the use of assistive technology, he is starting to have some private time.