This week is Mental Health Awareness Week, but I, and many others, live with mental health issues much of the time. I could talk to you about depression and the importance and value of being there for friends with a range of mental health problems, however, the matter I would like to share here is the struggle of coping with dementia in a loved one. Although not a mental illness per se, dementia is a "mental disorder" that is defined by a reduction in cognitive capability, with the cause originating in the brain.
"Dementia is an 'umbrella' term used to describe a collection of symptoms associated with physical changes in the brain which result in the gradual loss of mental functions such as memory and the ability to use words or to carry out previously familiar tasks.· Alzheimer's disease, which accounts for approximately 60 per cent of cases
Dementia encompasses a number of conditions, the three most common being:
· Vascular dementia (20 per cent)· Lewy body dementia (15 per cent).”
– definition provided by the Social Care Institute for Excellence, London
- There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. This will soar to 2 million by 2051.
- 225,000 will develop dementia this year, that’s one every three minutes.
- 1 in 6 people over the age of 80 have dementia.
- 70 per cent of people in care homes have dementia or severe memory problems.
- There are over 40,000 people under 65 with dementia in the UK.
- More than 25,000 people from black, Asian and minority ethnic groups in the UK are affected
- The forget-me-not is widely used as a symbol in healthcare to indicate a person suffering from dementia - in hospitals the flower is placed in patients' files and above beds so that nurses and staff can easily identify individuals and plan their care accordingly.
Almost a year ago my mother was rushed into hospital with sepsis and two pulmonary embolisms – one on each lung. A mix up between her doctor, the local pharmacy and herself resulted in her being taken off blood thinning drugs nearly 18 months ago, but not having the alternative medication prescribed to her provided by the chemist and as a result she developed blood clots that moved into her lungs. A brain, like any other living thing, when starved of oxygen, begins to die. The clots and sepsis, by preventing oxygen circulating, have exacerbated my mother’s early-onset dementia. She will suffer from cognitive impairment and poor mental health until she dies.
There are various signs that can, and in my mother’s case do, indicate dementia:
- Trouble with memory (most commonly short-term memory issues – such as being unable to remember what was for lunch, while still being able to list all the actors in the amateur dramatics production in which she played the lead role over 50 years ago)
- Having problems finding the right words – even common words used every day
- Confusion – I am mistaken for my mother’s cousin (over 30 years my senior) and she has introduced me to my sisters explaining to me that she has 3 daughters
- Being forgetful/misplacing things – such as keys, hair-combs or her purse
- Loss of her sense of direction – she does not trust herself to find her way home or to direct me if I drive her to places
- Fear of doing things or being left in a place that is not familiar
- Becoming repetitive (my youngest son says this is a blessing, as she can relive the pleasure of hearing good news a number of times during a conversation, for example, each time it is repeated, during the course of a meal)
- Losing the plot – quite literally. I took my mother to the theatre and she struggled to follow the storyline of the play and at times she struggles to participate in a conversation.
- Unable to perform daily tasks – my mother can no longer cook for herself and, unless encouraged to do otherwise, would probably happily remain in bed
- Mood changes – it’s odd, my mother used to have a fierce temper and was very demanding, but now she seems content in herself, despite the above list of problematic symptoms. She is not in pain, she sleeps well and is happy.
- Change in a fondness for certain foods or tastes - my mother has developed a very sweet tooth and now no longer enjoys fizzy drinks
- Losing time - often my mother is unaware of the day or year, although her passion for wildlife means she is usually aware of the season.
In many ways it is harder for those who knew her earlier in her life to cope with the change – my aunt, my mother’s younger sister, finds the current situation deeply distressing. Most of the time my mother is unaware of the alteration that has happened in just a year. For me, at times, the situation is heart breaking. I hate the fact that my sons will never know the fiercely intelligent, fascinating, attractive woman that she was (and to me still is).
If you are interested in understanding dementia, or even if you are not, I urge you to watch Barbara’s Story – a film developed by nurses at Guy’s and St. Thomas’ Hospitals in London. It is a powerful film about Barbara and her experiences during a hospital visit. It was designed to raise awareness of what it is like to suffer from dementia and to enhance the way we interact with a person who suffers from the condition. It is used for training of medical staff and others and has been shown to numerous people around the world. Be warned, you may find it very emotional to watch. There are six films in total compiled here into one viewing.
https://www.youtube.com/watch?v=DtA2sMAjU_Y - is the link on YouTube
It is only by talking about mental health that we can end the stigma. Mental health is a struggle but it is not a disgrace (and it is a struggle not just for those suffering, but also for those people who love and care for the people who are afflicted). Intolerance, indifference and cruelty are disgraceful. I am here because I want to try to help, to understand and to offer what support I can. If you want to talk I will listen.
If you want further information or someone else to speak with try these:
· available 24 hours a day, 365 days a year. If you need a response immediately, it's best to call on the phone. This number is FREE to call. ☎ 116 123 (UK)