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Alzheimer's disease: Carer's role

A person with Alzheimer's disease will need more and more help from their family or carers as the condition progresses, to help maintain their quality of life and retain as much independence as possible.

Do you realise how much you do?

Your role as a carer for a person with Alzheimer’s disease can be all consuming.

You help maintain the quality of life for your spouse, parent, family member, or friend with Alzheimer's disease.

You have learnt about symptoms, treatments, and the progression of the disease.

You probably keep track of appointments with the doctor, medication doses and times, and exercise.

You offer the love and support necessary to meet the challenges of Alzheimer's disease.

You are a carer. While many patients retain their independence for a period of time after being diagnosed with Alzheimer's disease, some may need more help with performing daily activities. For others, the diagnosis may come after weeks or months of you coping with symptoms that did not have a name. Regardless of how long you've been dealing with Alzheimer's disease or to what degree, Alzheimer's has affected your life and responsibilities in certain ways - physically, emotionally, or economically.

The role you have taken on is not an easy one. However, the following tips offer some guidance on how to maintain and improve your care giving relationship:

  • Take time for yourself. Make sure you have time to relax. If necessary, enlist the help of other family members or even employ someone to help out.
  • Learn as much as you can about your loved one's disease so you will know how you can help. You'll also understand what changes to expect in your loved one's behaviour or symptoms.
  • Help your loved one participate in as many activities at home and outside the home as possible. Maintain the intricate balance between helping your loved one accomplish a task and actually doing the task for him or her yourself. Allow the patient the time needed to complete daily activities on his or her own, such as dressing.
  • Consult your loved one about his or her family affairs. Although it's not easy to discuss these topics, you should be informed of your loved one's wishes regarding a living will, power of attorney, and do-not-resuscitate (DNR) order.
  • Set realistic goals for yourself and your loved one. Do not attempt to do everything. By setting attainable goals, you are setting everyone up for success, rather than disappointment.
  • Do not put your life on hold. Continue to meet with friends, participate in activities or groups, and maintain as normal a life as possible. You will feel more energised and are less likely to feel resentful in the long run.
  • Have someone you can talk to. You are there for your loved one - to listen and to offer support - but you also need a support person. Talk openly and honestly with a friend or family member. If this is not possible, join a support group. Understanding that you are not alone and that someone else is in a similar situation helps you to feel nurtured.

The most effective carer is well informed, prepared, and asks for help and support from all resources that are available.

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