Mary Jordan explains the first steps that should be taken after receiving an Alzheimer’s diagnosis.
With an estimated 850,000 people living with the symptoms of Alzheimer's disease here in the UK alone, many families have found themselves faced with the emotional loss of a loved one long before their physical passing. The loss of cognitive ability forces change on families and an understanding of the symptoms and progression of the illness is key to ensuring that your loved one enjoys the best quality of life possible in their final years.
Alzheimer’s is a progressive disease of the brain that slowly causes impairment in memory and cognitive function. The exact cause is still unknown and no cure is yet available.
Everyone dreads a diagnosis of Alzheimer’s, it takes time to process what this means. Once a formal diagnosis has been given, it’s important to gather together as a family and talk realistically about how you’re going to deal with the disease progression – understanding that eventually the person with the condition will need round the clock care.
Build a support team to help
As Alzheimer’s progresses, people cannot be left alone and the carer will need support to share the responsibility. This is one of the most important pieces of advice, it’s important to build a strong support team early on which can consist of family members, friends, neighbours, professional carers and support workers – accept help when it’s offered and identify specific things people can do to make life easier.
The help available
It’s important to find out what help is available, The Alzheimer’s Society offer a lot of support and advice, as do local support groups and day centres that are closer to home. Getting a care plan in place with a healthcare professional and social worker is a good idea but it can take time; often more than one plan is needed and these plans may well change over time as the disease progresses.
Tips on dealing with behavioural changes
This can be extremely distressing for everyone concerned but there are practical things one can do:
- Not knowing the difference between night and day and having no concept of time is very common – natural daylight bulbs in rooms other than the bedroom can make a big difference
- Do not argue – it’s important not to correct someone if they get things slightly wrong.
- Keep questions simple. People with dementia take time to process their thoughts and answering a question involves remembering what has been asked as well as deciding on an answer.
- Make choice easier – for the same reasons as simplifying questions. Don’t give someone with dementia too much to remember.
- Be patient. People with Alzheimer’s need more time to process thought, to answer questions, and to carry out even simple actions. If you accept this and allow more time for simple tasks everyone will be less stressed.
Being a carer is very stressful, tiring and can be very emotional at times and it is vital that carers do look after their own health and wellbeing. From taking regular breaks, to arranging a proper holiday, asking friends and family for help, and joining support groups, the key is to accept help and allow time out without giving in to feelings of guilt.
Remember that you are not alone. There are many sources of help and support for you and your loved one https://www.alzheimers.org.uk
Mary Jordan is the author of ‘The Essential Carer’s Guide to Dementia’ published by Hammersmith Books £12.99 in print and £5.99.