WHY this charity?

Dementia UK are the specialist dementia nursing charity there for the WHOLE family. Their nurses, known as Admiral Nurses, provide FREE, life-changing support and advice to anyone affected by dementia: when life feels overwhelming, their dementia specialist Admiral Nurses have the time to listen and the knowledge to solve problems.

I am fundraising to help funds this incredible service so that more families who are living with dementia are able to access the support that that they so desperately need at a time of confusion and worry. Dementia UK provide virtual clinics give you the chance to discuss any questions or concerns with a dementia specialist Admiral Nurse by phone or video call. Appointments are free and confidential and last 45-minutes.

Dementia is an umbrella term for a range of progressive diseases that affect the brain. It is NOT a natural part of aging and it is SO MUCH MORE than memory loss. Each type of dementia (there are over 200 sub-types) stops a person’s brain cells (neurones) working properly in specific areas, affecting their ability to remember, think and speak. The most common forms of dementia in the UK are Alzheimer’s disease; Vascular dementia; Lewy Body Demential and Frontotemporal Dementia.

Our family's experience

In 2021 my mum, Pat, was diagnoses with Vascular Dementia. Diseased blood vessels and mini strokes reduced the blood flow to her brain so that brain cells were being deprived of the oxygen and nutrients they need to function effectively, causing problems with concentration, thinking and carrying out everyday activities. Mum was becoming increasingly distressed and confused by the changes that were occurring in her brain so that living alone at home had become unsafe. Mum moved into a care home where she could be looked after by staff and be helped to remain as independent as possible within a safe environment.

Two years on and mum has now also been diagnosed with having Dementia with Lewy Bodies (DLB) and Parkinson's.

Lewy body dementia is caused by abnormal clumps of protein (called Lewy bodies) gathering inside brain cells. These Lewy bodies can build up in many parts of the brain but particularly in the areas responsible for thought, movement, visual perception and regulating sleep and alertness. Lewy body dementia is a progressive, complex and challenging condition which is thought to account for 10- 15% of all those with dementia. It particularly affects the person’s ability to think and move and can cause hallucinations, fluctuations in alertness and sleep disturbances which can be extremely distressing for the person and their family.

Mum has had a really tough time with the symptoms of Lewy bodies and it has been traumatic at times to see the distress and confusion this disease has caused her. Mum experiences recurring visual hallucinations (these can be pleasant or upsetting); Rapid Eye Movement (REM) sleep disorder, making her restless and experience intense dreams/nightmares. She also experiences sudden changes in alertness – and may stare blankly into space for periods of time. Mum is often drowsy and lethargic and spends a lot of time sleeping. Her movements have slowed so that she has difficulty walking, shuffling or appearing rigid (as in Parkinson’s disease) so she has lost the confidence to get up out of bed now. She experiences tremors in her hands and legs whilst at rest. She has problems with balance and has had many, many falls - each of which is another risk of a life threatening injury. She has bladder and bowel problems and difficulties with swallowing so she is reluctant to eat and has lost a lot of weight. Other symptoms may include changes in blood pressure, body temperature and impaired sense of smell. Sometimes she thinks she smells burning so becomes afraid she will be trapped in a fire. Life can be very confusing for her at times so it is important to help her to experience fun, laughter and happy interactions as these feelings help her to cope even if the details of the events are not remembered.

One blessing with DLB is that memory is often less affected than with other types of dementia but people may be at more risk of mood and behaviour changes such as apathy, anxiety, depression, delusions and paranoia. This aspect has probably been one of the most upsetting to learn how to manage as her daughter, and at the times when this was the worst the Admiral Nurses and the CMHT have been invaluable support. Mum has required anti-psychotic medications to help to allieviate extreme distress after the trauma of fall injuries and hospital visits, which she is unable to make sense of even though she recalls the dishes they caused her. PLEASE help me raise fund to enable this amazing support from the Admiral Nurses to be given to more families when they are struggling with these very challenging diseases.

Thanks for taking the time to visit my JustGiving page and thanks so much for reading if you got this far. xxx

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