The final day of my last university module was spent taking part in a Dementia Conference. As this is my particular area of interest, I had very much looked forward to attending the event. The speakers included a carer and a person living with dementia. The day was fascinating and illuminating, and I enjoyed it immensely.
The Carer’s Perspective
One of the speakers was a lady who cared for her husband who was living with dementia. As the lady recounted their story – of struggles and humorous episodes – I was very emotionally touched by what she had to say, and at times had to compose myself and blink back the tears. The speaker’s patience and kindness were especially evident, but so too were her frustrations and ordinary everyday ‘non-perfect’ human qualities. The lady worked extremely hard to care for her husband, and had completely changed her life by giving up her former job in a position of high responsibility, in order to take care of the person that she loves. As well as her husband becoming a different person, the lady spoke about her own loss of identity – through her former role as a career professional and as a wife. It was really quite sad, but the change was inevitable, and it therefore had to be embraced in as positive a way as possible.
One of the speaker’s main messages to our audience was that it was really difficult to obtain an initial diagnosis of dementia. Many professionals discount symptoms or misdiagnose them as depression. The lady was also keen to stress how the voice of carers is often completely ignored, perhaps on account of their non-healthcare professional status, and ironically, despite carers often being experts on the person in their care. The lady additionally felt that people were often given no information following a diagnosis, and were just left alone to get on with their lives, as though nothing was different. This must be a very disempowering situation, and one that could lead to very negative outcomes. At this point in the conference I made a mental note to myself, to always support the people in my care and their families, and to keep them fully informed about what is going on in the short term, as well as what to expect in the long term.
The Person living with Dementia’s Perspective
A lady living with early-onset dementia (a pre-65 years of age diagnosis, which can be as young as 40) bravely addressed our audience, in order to share her story. Due to the unreliability of her memory, she read from a pre-prepared script, which was suitably lengthy, informative and interesting.
The lady had formerly worked in a highly responsible job, and had started to notice problems with remembering things and repeating herself within her career role. After her diagnosis, the lady made the decision to give up her job, despite not being forced to by her employers. She decided upon her own considerations and realistic self-honesty, as she did not want to make any grave mistakes and end her career with disaster. This decision must have been really hard to make and to accept, but to partially counteract it, the lady positively decided, at this point, to do all the things that she still wanted to do, like travelling, before her decline becomes too restrictive.
The lady explained how her life remains full through involvement with dementia groups and by socialising with other people living with dementia. The negative side of her experience has mainly come from other people’s perceptions within the general public. For example, a shop assistant was irritated because the lady took a long time to get the right money together, and the assistant apologised to the customer waiting behind, rudely pointing out how long the lady was taking. The other customer apparently joined in with the rudeness by agreement and general sighing. In a state of growing agitation, the person with dementia meanwhile, dropped all her money onto the floor and must have felt so embarrassed. What a terrible episode this must have been for her, and sadly this was unfortunately not an isolated incident.
In order to help with daily life, the speaker explained that she does have a badge stating ‘Please be patient, I have Alzheimer’s’. For personal reasons however, she chooses not to wear it; perhaps because of wanting to avoid people’s pity, patronising comments or just being treated differently. Bearing such incidents in mind, the need for developing dementia friendly communities is compellingly clear. As dementia is on the increase, the general public desperately need to be educated about the condition and how they can help. To alleviate ignorance, discrimination and stigma, public awareness is vitally crucial.
In fact, this final point above reminds me of a comment that the speaker, who is a carer made: she said that some people that she and her husband knew, before his dementia diagnosis, now crossed over the road in order to avoid them. She felt that they were probably too embarrassed to talk to them, and they may well be afraid of dementia as a condition. The lady expressed a belief that, for many people, dementia is the new cancer. Before much investment in research, resulting advances in treatment, routine screening and increased public awareness, cancer used to be a particularly feared disease, which was often akin to an actual death sentence. Although there is still plenty to be done, recovery from cancer is now generally much improved, if detected early. As dementia currently stands however, there is no cure. Dementia is a progressive disease which commonly declines over 10 to 15 years, and eventually leads to death. Consequently much of the public are afraid of dementia, but like cancer, we must not give in to it. Until a cure is found, we must help people to live well with dementia. 10 to 15 years is a long period of time, and the person living with dementia is still there inside. Sometimes it is just a little bit harder to find them! Improved knowledge, the development of effective communication techniques and acceptance are key. If you are not already, I would urge any reader to become a dementia friend, and to see how you can help people living with dementia. Only together, can we make our society dementia friendly.