There exists a certain negativity where dementia is concerned, writes Derek Fisher. It’s understandable that a person caring for a loved one will feel stressed, but it’s important to try to stay positive. To say positive, it’s important to feel that you’re taking control of the situation and managing the many challenges of dementia.
Firstly, it is vital to obtain the correct and swift diagnosis. Please don’t forget that life does not end after a diagnosis and with the correct support structure in place one can live a happy and fulfilling lifestyle. Families play a huge part in this process and its good practice to have a family meeting with health professionals asap. They must be involved in order to offer the support required. They in turn will feel supported from the beginning. All of this should occur after a pre-assessment meeting where the health care professional can explain the support process in full. With all parties involved it empowers the person and the family and therefore they feel valued and listened too.
In order to cope with negative thoughts with the person just diagnosed it is paramount that they know they have someone to talk to and this must be constantly encouraged. This is more important for younger people where the suicide risk is higher.
It’s good to get the person recently diagnosed involved with peer support as early as possible and to this end a dementia café is ideal. I have been involved in setting two of these up and I have witnessed the emotional change in people once they attend. We arranged days out and trips to the theatre etc. Dementia is not a lonely disease and the more you talk about it and meet others you realise this fact is reality. Cafes are also good for the family carer who gets a break and meets other carers. Loneliness can lead to depression that leads to suicidal thoughts so the more one gets out and among life the better. Cafes and support groups must therefore be encouraged from the very start. The health professional, in which ever capacity they are in, should be involved in all decision making re social contact but only to offer ideas and support. The ultimate decision has to be a team one between the person diagnosed and the family/carer.
Going back tothe café idea, we introduced a forum where all the attendees were given the opportunity to speak their minds. People told about how they feel and what they would like from life. Others listened and gave moral support. That in itself is encouragement.
Another good outlet for support are chats on Twitter where you can engage with peers in an open and free forum. I join chats on a regular basis and the chats include those with dementia and their families. It is very rewarding all round and heart-warming to hear some stories and feelings. Add to all this the support available from the Alzheimer’s Society and Dementia UK, who both have free phone helplines. So, to summarise:
• Obtain a swift and accurate diagnosis
• Support from a dementia professional is not only at the diagnosis but is constant
• Involve the family as much as possible
• Encourage the diagnosed person to be open and to talk about how they feel
• Attend peer support groups as much as possible
• Life does not end with a diagnosis and can be very fulfilling and enjoyable.
Embrace the disease and move on but never without the constant support of the family and friends with the knowledge that professional support is always there. Never be afraid to ask a question or to show emotions in any way. It’s good to talk and its brave to admit that you cannot do this alone.