A diagnosis of dementia is a very difficult thing to hear, whether you are the person diagnosed or a family member or friend. However, a diagnosis doesn’t necessarily mean that medicines will be part of your treatment.

You have a right to make your own decisions, be involved in decisions that affect you and be supported in making decisions about your future.1

It is important to know your options when it comes to your treatments and future and to seek support to help you make the best decisions for yourself and your family. Discussing these issues early, and creating an advance care plan with your family, friends, carers and health professionals, is important.1

NPS MedicineWise and Alzheimer’s Australia have developed a booklet on Medicines and dementia to help you and your family, friends or carers ask the right questions and make decisions that will help you enjoy life for as long as possible.

Decision making and advance care planning

Advance care planning allows you to continue to manage your medical treatment and care, even if you’re not able to make or communicate your decisions in the future.1-4

Advance care plans can help you to discuss your values, beliefs and preferences for your future treatment and care with your family, friends, carers and health professionals.1-4

It is important to involve your family, friends, carers and health professionals in the advance care planning process as this will give them the confidence to advocate on your behalf.1-4

For more information on planning ahead and advance care plans for you and your family, friends and carers go to the Start 2 Talk website.

You may consider giving someone you trust ‘power of attorney’, or legally appointing a substitute decision-maker (guardian) who can advocate for you when you can no longer make or communicate your decisions.1,4

Find out more on legal matters such as these and how they work in each state and territory at the Advance Care Planning Australia website.

Preventing and helping with distress

Dementia causes changes in the brain that can affect your mood, personality and behaviour, causing distress.5 These expressions of distress are usually related to your health or your environment, or are associated with difficulties in expressing your needs because you are finding it hard to communicate.5

It may be helpful to discuss ways to help prevent or identify and relieve your distress, and decide what you are comfortable with in your ongoing care with your family, friends, carers and the health professionals caring for you .6,7

Your wishes may be included in your advance care plan and can help those closest to you and the health professionals caring for you to tailor therapies that best meet your needs.

NPS MedicineWise and Alzheimer’s Australia have developed a fact sheet on Strategies to address distress to help you and your family, friends and carers find out more about ways to minimise and avoid distress.

Treating the cognitive symptoms of dementia

Medicines are available that have been shown to slow cognitive decline and improve memory.8,9 Some medicines are known to worsen cognitive function.

All your medicines should be reviewed before starting medicines that might improve memory function.

Talking to your doctor about therapies (medicines and non-drug options) to help slow down cognitive decline and improve memory and learning is an important first step and can be done as part of your advance care planning.

For more information on medicines to treat cognitive symptoms of dementia, download Alzheimer’s Australia’s help sheet on Drug treatments and Dementia.

Other conditions with dementia

You may experience other conditions, such as depression, anxiety, pain, sleep disturbances, incontinence and urinary tract infections, alongside your dementia, which may or may not be related.10 Treating these conditions appropriately can improve your quality of life and prevent unnecessary discomfort or illness.

It’s important to talk to your doctor about these conditions to plan how you want them to be managed and include this in your advance care plan.

NPS MedicineWise and Alzheimer’s Australia have developed a fact sheet on Other conditions with dementia to help people with dementia and their carers identify relevant treatments and issues with other conditions and ask the right questions to help manage them effectively.

Good medicines management

Medicines do not have to be part of your care plan, and if they are, they do not have to play a large role in your life. It is important to remember that you have a right to decide what treatments and medicines, if any, you want to include as part of your future care.

You may already be taking medicines for other health problems you had before you were diagnosed with dementia. How you respond to these medicines may change when you have dementia. Your symptoms of dementia may also be making it harder for you to manage your medicines on your own.

The more medicines you need, the greater your risk of experiencing side effects and medicine interactions. It is vital to practice good medicine management techniques to minimise your risk of side effects and medicines interactions.

Read more about side effects and interactions.

All medicines you are taking should be reviewed regularly by a health professional involved in your care, to make sure they are necessary and useful, and that interactions between them are minimised. 

NPS MedicineWise and Alzheimer’s Australia have developed a fact sheet on Tips for good medicine management in dementia, to help you and your carers avoid medicine mistakes and use your medicines most effectively.

Questions to ask your doctor

  • Why do I need to take this medicine?
  • What are the likely benefits of taking the medicine?
  • Will the medicine help me achieve my treatment goals?
  • What risks, such as side effects, should I be aware of?
  • Will I be able to tell if the medicine is working or causing harm?
  • How do I take the medicine?
  • How long should I take it for?
  • If the medicine needs to be stopped, will this be safe and easy to do?
  • What would happen if I didn’t take this medicine?
  • What are my other treatment options?
  • Which option has the best balance of benefits to risks for me?

Support and care

Spending time with other people who have had a diagnosis of dementia can be very helpful. There are also specific support groups and services available across Australia for you and your family, friends and carers. These services provide:11

  • counselling
  • home support
  • information and advice on dementia and management of dementia
  • information on other services available (eg, respite care, home care, allied health care)
  • social support (eg, support groups).

Find details and contact information on a range of support groups and services for people living with dementia and their families, friends and carers.

References

  1. Alzheimer's Australia. Support for carers. A practical guide to services for families and friends of people with dementia. Canberra: Alzheimer's Australia, 2015. [Online] (accessed 21 December 2015).
  2. Advance Care Planning Australia. Create a care plan. Heidelberg, Victoria: Advance Care Planning Australia, 2015. [Online] (accessed 15 December 2015).
  3. Alzheimer's Australia. Start2Talk. Canberra: Alzheimer's Australia, 2015. [Online] (accessed 22 December 2015).
  4. State of Victoria Department of Health. Advance care planning: have the conversation. A strategy for Victorian health services 2014-2018. Melbourne, 2014.
  5. Alzheimer's Australia. Changed behaviours. Canberra: Alzheimer's Australia, 2012. [Online] (accessed 11 December 2015).
  6. Alzheimer's Australia. Feelings and adjusting to change. Canberra: Alzheimer's Australia, 2012. [Online] (accessed 16 December 2015).
  7. Alzheimer's Australia. Working with doctors. Canberra: Alzheimer's Australia, 2012. [Online] (accessed 16 December 2015).
  8. Australian Medicines Handbook. Drugs for Alzheimer's disease. Adelaide: Australian Medicines Handbook, 2015. [Online]. (accessed 16 December 2015).
  9. Royal College of General Practitioners. Medical care of older persons in residential aged care facilities (silver book). South Melbourne: RACGP, 2015. [Online] (accessed 17 December 2015).
  10. Alzheimer's Australia and NPS MedicineWise. Other conditions with dementia: what to ask your doctor. Sydney: Alzheimer's Australia and NPS MedicineWise, 2016.
  11. Alzheimer's Australia. Services and programs we provide. Canberra: Alzheimer's Australia, 2015. [Online] (accessed 21 December 2015).