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Your Health

Supporting Sheila and Pat in their Community

Pat  O’Connor has only one regret when she looks around her sister Sheila’s beautiful home – that her move there didn’t happen sooner.

Sheila has Down Syndrome and recently moved to Killinthomas Lodge near Rathangan, Co. Kildare. The facility opened in October 2016 to support four women who have an intellectual disability and are living with dementia. The focus in Killinthomas is to support the individuals to live in their community throughout their dementia journey to the end of their life.

After initial hesitancy, Pat agreed that Sheila, who developed dementia in recent years, would be ideally suited to make the move to the new house. Neither of the sisters have looked back.

“The house is absolutely wonderful, it was mentioned some years back and now my only regret is that it didn’t happen sooner. I admit I was fearful about the change. I didn’t want to do anything that might upset Sheila but, in the end, I decided to do it for her sake,” explained Pat.

“The whole place and staff are quite extraordinary. I am still amazed to be able to watch the high standard of care they show to the ladies every day. They don’t see the disability, they see the person. Everything is centred around what the person would like and their needs. When they choose the colour of the walls or the bedspread, they think if it is something Sheila herself would like. Everything is for the person first of all.”

Martina Leigh, Clinical Nurse Specialist (CNS) in Ageing Care for People with an Intellectual Disability at the Muiriosa Foundation, leads the interdisciplinary dementia team that set up the house to be environmentally supportive to living well with dementia.

The Muiriosa Foundation receives funding from the HSE.

muiriosa-foundation-web

Each of the individual’s personality and life experiences inform their care plan and daily support strategies to empower their unique role in their local community. The teams priority is to support each lady to enjoy a meaningful life and uphold what is important to them.

“The Muiriosa Foundation statement of vision, mission and core values is committed to supporting individuals with an intellectual disability to live a life reflecting their will and preference, enjoying a rich network of relationships and live a life that is inclusive, meaningful and valued,” said Martina.

“We were delighted to be able to use this new model of care and allow these four ladies to age in their own home. The Muiriosa Foundation had a plan for them to stay in the community and get the care they needed specific to their intellectual disability.

“Once we identified the house, we immediately began to look at how we could make it stand out environmentally to support the ladies living there. We put in a new kitchen a couple of months ago and myself and Jennifer the occupational therapist worked together to make sure every detail was perfect.”

This dementia-specific service was set up by an Inter disciplinary team led by the Clinical Nurse Specialist to provide unique support for each individual throughout their own dementia journey. The team includes an OT, registered nurses, care assistants, social care workers and leaders, speech and language therapist, dietician, physios and GPs.

“The team have a deep commitment to enriching the lives of each individual living with dementia and their families. The house is a large bungalow, set in a rural setting: each individual has their own bedroom, reflecting their own personal taste. During the initial transition into the house, each individual had their existing bedroom replicated in colour and style to create the feeling of familiarity in conjunction with an individual orientation support programme. Two of the individuals are lifelong friends, and continue to live alongside each other, while living with dementia,” said Martina.

“The physical environment at Killinthomas is organised to support and enable each individual’s independence and ability for as long as is possible. This includes signage on doors to orientate individuals to rooms like their bedroom and the bathroom. The floor covering is pattern free and consistent throughout the house to support individuals to walk with greater confidence. The kitchen presses are organised to support the individuals to see where the crockery is located in order to support them to set the table. The kitchen table is set to provide contrast between plates, food and table cloth, along with ensuring there is a relaxed atmosphere and distraction free to support and enable each individual enjoy their meal, while maintaining their ability and independence for as long as possible.

“The house is set up to create a stress-free homely atmosphere where individuals enjoy participation in failure-free activities. This is created in the planning with individuals as to how they spend their day. Each Individual is supported to be a home-maker and engage in roles they enjoy. Activities include making soup for lunch, arranging floral bouquets, various household activities like preparing shopping lists and putting away groceries. Sensory experiences are created through preparation of meals and baking. Through participation and involvement, a sense of achievement and enjoyment is experienced. Each individual is supported as per ability to be engaged in their local community, through membership of their local library, shopping locally and accessing the local amenities.”

Life Story work plays a significant role in supporting each of the individual’s life reminiscing about achievements from the past and ongoing planning of different activities – one individual, through her love of felt making, was instrumental in settling up a local community-based class. Another individual’s love of music is reflected in her personal song book, having all the words to her favourite songs, enables staff to sing along to songs that can bring about enjoyment, laughter and enriched meaningful connections; this is a very person-centred supportive strategy to engage with when an individual is in any distressed.

“Family connections are actively encouraged, individuals are supported to visit family members at home, tailored supported are established to facilitate such visits. Family members are encouraged and welcome to visit regularly, one member comes with his guitar, and a great sing-along is enjoyed by all,” added Martina.

Person-centred support meetings are held regularly with the individuals to plan and support activities and experiences unique to each individual and the stage of dementia they are experiencing. Staff are supported by monthly dementia team meeting led by the CNS and OT which focus on each individual enjoying good health and life that is meaningful and fulfilling, with a ‘nothing about me without me’ approach to life.

In recognition for the service she co-ordinates, Martina won the bursary award at the 5th Annual Regional Nursing & Midwifery Conference.

Pat highlighted the ‘amazing’ transformation that she has seen in her sister since the move four years ago.

“It has changed her completely. She is just so happy and content in herself. She loves going out and getting to various different events. She loves shopping too. The staff are great at getting her out and about when she is able.”

Pat added that she feels so happy to see Sheila settled in her own home.                                                             

“She came home to my house for the bank holiday weekend recently and I had no fear at all for her returning back, she was simply going back to her own home. And visiting her there is just so nice and easy. I have a bedroom there to stay if I need to stay over and I feel totally welcome there.”