Dementia Care – A Love Story | You Can Care Week
This blog has been co-created by Medstars’ Annabel Beales and Demi Sanders.
Today is National Dementia Carers’ Day. There are currently 850,000 people who suffer from Dementia in the UK. This number is only expected to grow and there’s currently no cure. Dementia is a gradual disease which people can live with for years. However, care for a person with dementia can be prohibitively expensive and difficult to find, due to the varied nature of the disease. Because of this, 700,000 people in the UK act as an unofficial carer for a friend or loved one- which can have a huge toll on a person’s mental and physical health. National Dementia Carers’ Day aims to raise awareness of this issue and provide unofficial carers with the recognition they deserve.
What is Dementia?
Dementia is, according to the NHS, a group of symptoms caused by a decline in brain function. Symptoms may include changes in a person’s temperament and personality, a loss of memory and physical ability, and difficulties in planning. These symptoms make it difficult for the individual to retain their independence as the disease progresses.
What is an unofficial carer?
An unofficial carer may be a relative, but can also be a close friend or neighbour. Unlike someone who works for a care company or a service such as meals on wheels, an unofficial carer does not get paid for what they do.
Despite this, the work they do could not be more crucial. They help the sufferer to retain independence, whether this is in the form of allowing them to continue living in their own home or help with certain day-to-day tasks. They will have to create and maintain a calm environment adapted to the needs of the sufferer- for example setting up audio reminders to say shut the fridge or lock the front door or making sure that rooms are furnished to minimise confusion or the likelihood of accidents.
A sufferer of dementia may also need help with maintaining a healthy lifestyle and personal hygiene. Recent studies also suggest that getting a good night’s sleep is key to preventing the advancement of the disease- again, making sure this happens may be the carers’ responsibility. Could Mano add a bit here about the brain being washed when we sleep?
Unofficial carers may also have to look after their loved one in a legal sense, managing their finances and any other official matters. The huge costs and legal implications of a person losing their ability to look after themselves means that this can be immensely time-consuming and stressful.
Relief and support for carers
There’s no doubt that caring for a loved one with dementia is an incredible expression of love. However, this level of responsibility for a loved one can understandably put an enormous mental and physical strain on a person. Dementia sufferers can sometimes act in a manner that is challenging, and this combined with the gradual change in someone’s personality and way of being can be incredibly difficult to deal with. The varied nature of the disease means that sometimes it can be impossible to predict what is needed- trying to cover all bases and create the best quality of life for a loved one can be overwhelming. Factor in other responsibilities, such as work or family commitments, and it’s easy to see why carers need the recognition, and respite, that they deserve.
Respite care, where someone takes over for a short period of time, can be incredibly helpful to the unofficial carer. Day centres are another option- they may be a difficult one to consider, and finding the one that is suited to your loved ones needs is not always easy- but the right one can make an enormous difference to a carer’s life. The Alzheimer’s Society, Dementia UK or Carers UK all provide information about local carers’ groups. These can be a place just to have a chat with those in the same boat, or they might put on activities to help you relax or manage your tasks more effectively. If you can’t get to a carers’ group, there’s also the Internet. Various forums provide an outlet for those who need to talk.
Tommy Whitelaw cared for his mother with dementia for 6 years before she passed in September 2012. Prior to his mother’s diagnosis, he travelled the world for 10 months a year with work. However, Tommy gave this up to keep the promise he made to his mother, Joan, that he would try his hardest to care for her in her own home for as long as possible.
Tommy describes caring for his mother as a ‘love story’ despite the loneliness and isolation they both felt as the result of her illness. He recalls finding it almost impossible to access the right health services to assist with his mother’s condition and wanted to hear about other peoples’ experiences as dementia carers. He began blogging and campaigning and was soon inundated with people wanting to share their stories, good or bad. He said the common denominator in all the letters he received were the words ‘love’ but also ‘lack of understanding’. Tommy feels that people with long term conditions get left alone and he felt on many occasions his mother wasn’t understood and people failed to look beyond her diagnosis to engage with her as an individual. Tommy emphasises the importance of social engagement because it provides dementia sufferers with the strength and ability to carry on.
Tommy describes his mother as a ‘beautiful, kind, dignified and magnificent woman whose dementia was doing everything it could to change everything. We’d wake up and everything we thought we knew had completely changed.’
Tommy is currently working on the Dementia Carers Voices project with the Health and Social Care Alliance which will build on his ‘Tommy on Tour’ campaign by engaging with carers, collecting their stories and raising awareness amongst health and social care professionals on both dementia and caring.
Here, Tommy talks about the transformational impact that listening, kindness and understanding made to his journey as a carer: