There are many types of dementia and everyone living with dementia has their own unique experience. A diagnosis of dementia can be overwhelming - but it is important to know that many people living with dementia live fulfilling and happy lives, contributing to the welfare of their families and communities.
Unfortunately there can be stigma attached to dementia, often arising from people’s lack of knowledge about it or because they are frightened by it. Many people living with dementia report that some friends and acquaintances (even family members) drop out of their lives following their diagnosis, an experience that can be hurtful and which may harm your sense of self-worth and ability to remain in control of your life.
Stigma can also take the form of people to your family members as if you were not there. Again, this can be hurtful and discouraging.
What can you do about stigma?
Perhaps the best way to tackle stigma is to be open and direct about your illness, talking to people about how you feel and what you plan to do. There are helpful leaflets and online links that can help you to understand your own position and to explain it to others, including: http://www.ageuk.org.uk/Documents/EN-GB/Information-guides/AgeUKIG48_living_with_early_stage_dementia_inf.pdf?dtrk=true
To live well with dementia it’s vital to stay engaged and get as much support as you need. Friends and family will help, as will keeping up your interests. There are also networks for people living with dementia and their carers, which can be enormously helpful. Local branches of the Alzheimer’s Society often run early-stage support groups; memory clinics, dementia cafés and Dementia UK may also provide access to support groups.
It’s important not to take stigma to heart. Ignorance or fear in others is not your fault, and they’re not helpful to anyone. They are not a reflection of you and your life. Many people living with dementia and their carers campaign in a large or small way to overturn ignorance and to make their communities more dementia aware and friendly. It’s a battle worth fighting.
Tips for people living with dementia: some people living with dementia are actively fighting against disempowering language. Their work and a short film about it can be found at http://dementiavoices.org.uk/wp-content/uploads/2015/03/DEEP-Guide-Language.pdf For overcoming stigma there is no substitute for talking to other people who in a similar position: local branches of the Alzheimer’s Society or Dementia UK will be able to tell you about support groups, who can also be accessed through memory clinics.
Tips for carers of people living with dementia: try getting in touch with the Carers Trust to see what support is available locally. http://www.carers.org/ Local branches of Dementia UK (particularly Admiral Nurses where they are available) and of the Alzheimer’s Society will also be useful.
Tips for professional carers: The Dementia Action Alliance provides practical strategies for tackling stigma around dementia, working towards dementia friendly communities. http://www.dementiaaction.org.uk/joint_work/dementia_friendly_communities
There is also the opportunity to train to become a Dementia Friend: https://www.dementiafriends.org.uk/