Living with dementia: an unexpected journey
Dementia is a journey; a diagnosis doesn’t mean life overnight will be different. No two people share exactly the same journey but hearing experiences of what life can be like from people living with dementia can be a huge help. At PillarCare we have been working with people living with dementia for more than 20 years. For every person with a dementia diagnosis, there are also loved ones and family members whose lives will also be changed as a result of this condition.
Our work at PillarCare focuses on supporting people to live as well and as independently as possible with whatever life brings. We manage care for many people living with dementia and have seen many lives change over this time. Keeping positive about the condition can be challenging at times but there are many truly wonderful organisations, charities and small groups to support people living with the condition.
As we learn more about dementia, there has been a shift in people’s perceptions of the condition. Rather than seeing people as victims of an illness, it is helpful to look at a dementia diagnosis as an opportunity to plan changes to lead a fulfilling life on a new journey.
Look at a dementia diagnosis as an opportunity to plan changes ’
Blazing the trail of ensuring that those living with dementia are heard, and remain at the heart of decision-making about the condition, is Deep — the Dementia Engagement and Empowerment Project — a UK-based network of people living with dementia. Deep consists of around 80 groups of people with dementia, across the UK, and its website (dementiavoices.org.uk) has details of how to find the group closest to you.
One of the hardest part of any diagnosis is not knowing how your life will be affected and what to expect. Dementia Tip Share (dementiatip-share. org.uk) is an innovative online resource hub, where people living with dementia can share practical, life hacks, tips on how to approach life’s little problems and an upbeat approach to tackling life challenges when living with dementia.
Dementia Diaries (dementiadiaries. org) is a project to record the reality of living with dementia. Participants have created daily records of their dementia. These touching and life-affirming diaries offer an invaluable resource to people living with dementia to chart others’ progress with the condition and help share real-life experiences that otherwise would be hard to access.
Raising awareness of dementia, whom it affects and how, and challenging pre-conceived ideas of what a dementia diagnosis means, is a vital part of the work of national dementia charities Alzheimer’s Society (alzheimers.org. uk) and Dementia UK (dementiauk.org). They work with organisations, clinicians, local groups and individuals, in the areas of support, education and research.
Both charities have excellent resources on their websites and their helplines enable you to speak to someone who understands what you are experiencing.
Finding new interests and pursuits suitable for someone living with dementia to enjoy together can be challenging. We often help family members to find local dementia-focused activities that are accessible for family and friends.
Organisations such as the fantastic SongHaven (songhaven.co.uk) provide a space where people living with dementia and their carers and companions, including children, can be together and enjoy an afternoon of professional music concerts. SongHaven welcomes people at every stage of dementia, and provides a safe and celebratory environment.
Arts4dementia (arts4dementia.org. uk) is a community based charity offering events, workshops and resources to empower people whose lives are affected by dementia to continue to express, create and be stimulated.
We all know that dementia changes lives. But a dementia diagnosis is not the end of the life, or the person that you know. From our experience of working with dementia we know that the condition shapes life very differently from what may have been expected but life can continued to be lived and loved.
In time, there will be more changes to society’s perception of dementia, as the rate of diagnoses is projected to increase. It is by learning from those living with dementia now, listening to their journeys and sharing experiences that we can approach this with positivity and readiness.