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REAL LIVES|LARRY’S STORY|LIVING WITH DEMENTIA
children and studying Sociology, Psychology, Law, Social Policy and Social Work Practice opened my mind. I have decided that I would like to work with children, eventually.
Becoming a Personal Assistant was not part of my plan. I was looking for a role with children then the opportunity to work with Larry came up. I needed a job and when I read the social worker assessment and the care plan, I thought I would like to try being
a PA. It’s a bit different than any other type of job. Larry is my employer, I have a contract of employment, a person specification and a job description. Larry and I had a three month trial period followed by a review. I have been working with Larry for 18 months now, this is the first job where I work in partnership with my employer. It’s a job where I make a difference to somebody’s life, it’s amazing.
I really feel I can be myself and feel appreciated! We work in partnership together towards shared goals, there is no typical week and no typical day. So, I try to put some structure and routine into our working relationship.
Larry appreciates me because I remind him to take his medicines and help him to get ready for his day. Sometimes we have our meals together, this helps Larry break out from his isolation, he enjoys meals better. We also cook together, which promotes safety in the kitchen and we also enjoy short trips around the park next to where he lives.
I am encouraging him to push towards greater mobility, independence and balance, I take his arm sometimes and persuade him to walk without his stick. Larry has lots of hospital and GP appointments and I try to go with him every time.
I think my role, as a PA is to understand the support relationship, I bring the human element to Larry’s care. This is not just any job, it’s much more. My place is not to judge but to assist and support. The job satisfaction comes from discovering what Larry and I can do together, we experiment and find out what works for him and what doesn’t. There is a great sense of achievement and fulfilment being a PA.
I think it is such a mistake to place labels such as ‘service user’ on people, it somehow dehumanises them. Labels can limit people too and make it difficult for others to see the person in front of them. Larry is never a ‘service user’ to me, he is ‘Larry’ ­ the joyful, playful, mischievous, stubborn and of course, the best ‘Larry’ in the world. I have met lots of people since I’ve known Larry and learned a huge amount about caring for someone.
So, what are the difficulties associated with being a PA?
Well, we spend a great deal of time together and sometimes it can get very intense.
It feels like he is really dependent on me.
I don’t have any colleagues to chat to for support and I don’t have any supervision or
an HR department on hand either. If I don’t know what to do, there’s nobody to ask and that can be a bit disconcerting.
What are the things that I enjoy the most about my role?
I have to use my own initiative. I have to be resourceful and creative, I enjoy navigating through challenging situations. Working with Larry has provided me with opportunities that I would never have experienced when living in my own country. I have been to Scotland and to Wales, to the seaside and to the House of Lords!
I have also met thirty of Larry’s family members at an event in the Netherlands where his sister lives. His family welcomed, embraced and adopted me!
I think my current role as PA provides me with a springboard of opportunity into many areas of work in the care sector. Everything I’ve learned and the experience I’ve had being Larry’s PA will help me to find work with children, young adults, people with disabilities or older adults.
I now have a great deal of knowledge about dementia and I’m putting it to good use, as I’m now a volunteer with a fantastic organisation called YoungDementia UK. (visit: www.youngdementiauk.org for more information).
• People with a learning disability are at greater risk of developing dementia at a younger age. Studies have shown that one in ten people with a learning disability develop young onset Alzheimer's disease between the age of 50 to 65. The number of people with Down's syndrome who develop Alzheimer's disease is even greater with one in 50 developing the condition aged 30­39, one in ten aged 40­49 and one in three people with Down's syndrome will have Alzheimer's in their 50s.
Contact Us
YoungDementia UK PO Box 315, Witney. Oxfordshire OX28 1ZN
Tel: 01993 776295
Email: support@ youngdementiauk.org
Website: www.youngdementiauk.org
    About...young onset dementia
 • Dementia is ‘young onset’ when it affects people of working age, usually between 30 and 65 years old. It is also referred to as ‘early onset’ or ‘working­age’ dementia.
• Dementia is a degeneration of the brain that causes a progressive decline in people’s ability to think, reason, communicate and remember. Their personality, behaviour and mood can also be affected. Everyone's experience of dementia is unique and the progression of the condition varies. Some symptoms are more likely to occur with certain types of dementia.
• It is estimated that there are 42,325 people in the UK who have been diagnosed with young onset dementia. (Ref Dementia UK, 2nd edition 2014, Alzheimer’s Society). They represent around 5% of the 850,000 people with dementia.
• The actual figure could be higher because of the difficulties of diagnosing the
condition and might be closer to 6­9% of all people with dementia. Awareness amongst GPs is still relatively low and when people are still at work, symptoms are often attributed to stress or depression.
• Dementia in a younger person can be difficult to diagnose. Getting an accurate diagnosis may take time. People can also be very reluctant to accept there is anything wrong when they are otherwise fit and well, and they may put off visiting their doctor.
• Problems with language, vision, behaviour or personality may be the first symptoms, rather than memory issues.
• People with young onset dementia are more likely to be diagnosed with rarer forms of dementia and are more likely to have a genetically inherited form of the disease.
• People are likely to still be working, have significant financial responsibilities and have children or parents to care for.
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