A diagnosis of a dementia will mean many thoughts and feelings for the person with the diagnosis and for their close family, mainly around anxiety about the future.
How you respond to these concerns will be personal. We cover the possible responses of the person being diagnosed in Q2.
For close family there will be questions about the impact on relationships, finances, managing health concerns and on family life in general – will we still be able to go on holiday? Can the person still drive? What will we say to our friends?
There are answers to all these questions on reliable websites such as the Alzheimer’s Society https://www.alzheimers.org.uk/ and Dementia UK https://www.dementiauk.org/ which incorporates Young Dementia (meaning dementia in people under 65).
If the diagnosis was made in Devon, it is likely that you will have been introduced to a local Alzheimer’s Support Worker and been given a pack of information which the worker can help you look through to find support that works for you.
Rarer dementias have their own organisations and websites, for example the Lewy bodies Society https://www.lewybody.org/ and the Rare Dementias Support Group https://www.raredementiasupport.org/
All these organisations have phone lines, so you can contact them direct with your questions.
You may find local support from people in a similar position as yourself in carers’ groups. Currently most of these are meeting by using online apps such as Zoom or by phone. A list can be found on our website https://devoncarers.org.uk/carers-support-groups/ You will need to contact the organiser to find out what the current arrangements are.
Take your time with all of this. Prioritise what you want to read and do. You may not even think of yourself as a carer. You may be determined to carry on as usual. As the dementia progresses, it will become more apparent which areas of your life will need to adjust.
In general, there are some things that will need to happen:
Getting prepared financially and legally. Dementia is a disease of the brain. Meaning that it will decrease the person’s abilities in thinking and communication.
Discussing plans to manage finances and health care using Power of Attorney needs to be done while you can both have your say. The Alzheimer’s Society https://www.alzheimers.org.uk/get-support/legal-financial and Age UK https://www.ageuk.org.uk/information-advice/money-legal/ have good advice on this.
Build in breaks for yourself: Dementia can shake a person’s feelings of security (see Q5). Routine and getting use to a small group of familiar, trusted people rather than relying on one carer can help the person feel safe and encourage them to keep active. This will allow you as the carer to continue a life that you see as purposeful, in the knowledge that the person you care for is also having time that they see as enjoyable. The balance between being a carer, being partner/son/daughter and having time for yourself will be ever changing – all are important.
Look for opportunities to slow down the progress of the dementia and lessen your own risk of dementia: Currently there is no cure for dementia. However, research shows that there are a number of actions you can take to slow its progress and reduce the risks for yourself.
- Socialise: keep going to community groups and keep seeing friends and family. Feeling we belong, laughter and shared interests are good for our mental health.
- Keep active: what is good for the heart is good for the brain. The brain needs a supply of oxygen and blood. Good cardiovascular health is important to sustain this, plus, exercise, especially outdoors, lifts the mood.
- Challenge yourself: learning builds new connections in the brain. For people with dementia, learning new skills might be difficult so using what you can still do is important.
- Look after your general health: eating well, getting a good night’s sleep, drinking only in moderation, keeping up with medical appointments – all the usual advice still applies. You will both need good health to enjoy life to the full.