As I am writing this blog it is 12 weeks to the day that my beautiful mother Jean passed away at the age of 79. I had been her main carer since her diagnosis with mixed dementia in February 2012. At first, she managed to live independently in Dorset, but over the years, her confidence eroded and she moved to live with me and my partners in Kent in 2017. The last two years of her life were really happy ones filled with lots of excursions, daily outings to her favourite garden centres, country parks and restaurants, and enjoying her garden. The deterioration in her health happened very suddenly and she skipped several phases of the condition, moving quickly into end of life in early December. I then took time out from work to fulfil her wish to be supported to die at home. As a nurse, it was the last gift I could give her but it took all my strength to achieve, and I miss her terribly now.
Enabling people to live well
In our local communities up and down the country, there are people living with dementia and it is really important that we work together to provide community support to enable people to live well. There is an awful stigma attached to the condition with both the person and their family (if they have one) often labelled and treated differently because people find it hard to understand the symptoms. We see negative language like “sufferer” being used and a prevalence to talk about the medical diagnosis and treatment of dementia with finding a miracle cure being the predominant discourse. However, no two people with dementia are alike and will not experience the same symptoms. A diagnosis of dementia does not mean the end of your life, nor does it mean that you have to curtail your interests, hobbies or career as a result. It is also labelled a disease of old age but the numbers of people experiencing young-onset dementia are rising.
Community support for dementia
So what can we do as a local community to support each other? It is really important that we work together to co-create a network of support for families affected by dementia. This is really important as it helps to cut down social isolation and restores confidence that it is absolutely possible to still have an active social life for as long as possible. It also helps us to understand what resources are available to provide community health care support in the home to enable people to live at home for longer. Very often, as a nurse and a researcher, I have found people do not know what services are available to them or how to access them. So having local support groups, memory café’s, talks and events are really important to raise awareness. I also think it is really important for us to collectively showcase projects that put people living with dementia at the heart of the initiative so that we can understand and share the impact of this vital work.
CASCADE – Independent living for as long as possible
Until recently I have been part of an EU funded project called CASCADE which is an important social innovation initiative developing a new model of care and facilities that enable people to be as independent as possible for as long as possible. Sharing and learning from best practices in Belgium and the Netherlands, this vital project is leading to two new capital build projects in our region. The Harmonia Village in Dover is using derelict housing stock to create a new supportive community hub that keeps people living with dementia out of the hospital and will support them to live at home for as long as possible through a range of telemedicine initiatives. This is great news for families as I know only too well what impact a noisy hospital environment can have on our loved ones. For many people living with dementia, hospitalisation becomes a vicious cycle because there is a lack of social support or care at home, so they become trapped in a hospital bed with nowhere to go. This is especially true if they have no family locally to support them. In Medway, Medway Community Health Care CIC is also developing a new support facility for their community near Darland House.
Dementia Friendly Tea Room
Whilst aspects of dementia can be very challenging for many families, there are lots of things we can do together to raise awareness and offer more support for each other. At The Bay Trust charity in St Margaret’s Bay, we have gained Dementia Friendly status for our tea rooms. In the coming months once I get into the post as the new CEO we will hold regular memory café’s there for families to get support and talk to other people and invited guests will be available to help our communities to find out key information they may need. The Pines Gardens and the new Creative Hub will offer an opportunity for some vital relaxation over the summer months, and there will be a lot more health and wellbeing activities and events running throughout the year from the Calyx Health and Wellbeing Hub. I hope that we will be working closely with local dementia support groups in the region, our community village parish groups and Women’s Institute and with the Dover SmART project, to name just a few.
I am happy as a practising health professional to offer support and advice and signpost people to services as well as speaking at local events to share my lived experiences to benefit others. There is a wonderful saying here that is my mantra…
Come and see us during Dementia Action Week and find out more about what we can offer you in terms of support.
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