Medicines do not have to be part of your care plan for dementia. If they are, they do not have to play a large role in your life.

NPS MedicineWise and Dementia Australia (formerly Alzheimer's Australia) have prepared materials you can download. They can help you ask questions and talk with people close to you and the health professionals involved in your care about how you would like to be supported.

The main resource is an information booklet, designed to help you:

• talk about dementia with the people you choose. This may be your family and friends and health professionals involved in your care. This can include GPs, pharmacists, specialists and nurses
• find out about advanced care planning
• find out what support you can access to manage your symptoms
• find information on what treatment options may be best for you
• record details about symptoms, medicines, values and wishes when it comes to your care
• find out about support services available to help you and those closest to you.

You can order a printed copy of this booklet. Please contact the Dementia Australia office in your state or territory (formerly Alzheimer's Australia). 

Fact sheets

The fact sheets below include information and tips to help with choices around your care.

Watch a video on medicines and dementia: Imelda's story

This initiative is funded by the Alzheimer’s Australia National Quality Dementia Care Initiative with support from J.O. & J.R. Wicking Trust.

Every person with dementia is unique. They will react in their own way to events or factors around them.¹ People with dementia can become upset and distressed. This may be a result of medical, physical, emotional or environmental factors.² These expressions often stem from an unmet need. 

It is important to know why people with dementia become distressed and find ways to help or prevent it.³ 

Health professionals refer to expressions of distress as 'expressions of unmet need’ or ‘changed behaviours’.

Reasons for distress

There may be one or more underlying factors. These factors can lead people with dementia to feel distressed or not content. Factors adding to stress may be medical, physical, environmental or emotional (see below).² 

The way care is given to the person with dementia may also add to emotional stress. This might be use of physical restraints or not meeting their social and cultural needs.²

The underlying cause leading to distress should be identified and addressed by families, friends or carers using a positive approach. People with dementia may use hand gestures, body language, facial expressions, eye contact and actions in their attempts to help their family members, friends or carers identify the reasons for their distress. Below is a checklist of ways to help prevent distress.⁴

References

1. Alzheimer’s Australia. Problem-solving. Changed behaviours and dementia. Canberra: Alzheimer’s Australia, 2012 (accessed 22 December 2015).
2. Burns K, et al. Behaviour Management. A Guide to Good Practice. Sydney: Dementia Collaborative Research Centre – Assessment and Better Care, University of NSW, May 2012 (accessed 22 December 2015).
3. Alzheimer’s Australia. Agitated behaviours. Changed behaviours and dementia. Canberra: Alzheimer’s Australia, March 2012 (accessed 22 December 2015).
4. Alzheimer’s Association. Challenging Behaviors. Chicago, USA: Alzheimer’s Association, 2011.

You can manage emotional stress by addressing your mood or distress symptoms. Simple strategies and changes in the delivery of care is recommended.¹ If you need medical treatment, your doctor will tailor treatment to your needs. For instance, they may prescribe antidepressants for moderate to severe depression.² 

Your health professional should review your medicines often. When this happens depends on the medicine you are taking. Talk to the doctor or other health professional about adding medicine reviews into a care plan. Using a medicines list can help you manage your medicines. Talk to the doctor or other health professionals. They can tell you about the active ingredient and brand names of the medicines you are taking.

You can read about groups of medicines that may help reduce the symptoms of distress below.^1,3,4

Anticholinesterases

Some of the symptoms of Alzheimer's disease are thought to result from a lack of acetylcholine. This is a chemical that sends signals in the brain. These medicines help increase the amount of this chemical in the brain. This can help with the symptoms of Alzheimer's disease.

Other medicines for Alzheimer's disease 

Memantine

Memantine works by blocking a certain type of receptor called NMDA receptors in the brain. They are involved in sending nerve signals in the brain, eg, in learning and memory. Memantine protects these receptors from a chemical called glutamate, which might be adding to brain degeneration. 

Antipsychotics

Antipsychotics work by changing the effect of certain chemicals in the brain. These include dopamine, serotonin, noradrenaline and acetylcholine. These chemicals can impact how you behave, your mood and how you feel. There are many different antipsychotics. They are split into two types – the newer or atypical antipsychotics, and the older typical antipsychotics.

Antidepressants

Antidepressants are thought to work by raising certain chemicals in the brain. These include serotonin and noradrenaline. They are linked to your mood and how you feel.

Anxiolytics

These medicines help with the symptoms of anxiety. As with those listed above, they work by changing levels of different chemicals in the brain.

References

1. Psychotropic Expert Group. Therapeutic guidelines: psychotropic. Version 7. Melbourne: Therapeutic Guidelines Limited, 2013.
2. Burns K, et al. Behaviour Management. A Guide to Good Practice. Sydney: Dementia Collaborative Research Centre – Assessment and Better Care, University of NSW, May 2012 (accessed 22 December 2015).
3. Royal Australian & New Zealand College of Psychiatrists. Assessment and Management of People with Behavioural and Psychological Symptoms of Dementia (BPSD). Sydney: NSW Ministry of Health and RANZCP, 2013 (accessed 23 December 2015).
4. Australian Medicines Handbook. eAMH. Adelaide: Australian Medicines Handbook, 2015 (accessed 23 December 2015).

A person with dementia has a legal right to refuse treatment. A carer or family member of a person with dementia may also have these rights.

Being diagnosed with dementia doesn’t mean a person can't make choices on medical treatment and management.¹ They have the right to make choices if they:

• understand the information given
• can weigh the risks and benefits of treatment, and
• can communicate the choice to someone else.^1,2

Under these circumstances the person with dementia can talk to their doctor. They can talk about the risks and benefits of medical treatment for distress. The doctor will record their wishes about treatment on their medical record.

Sometimes, the person is not able to verbally communicate with family members, friends or carers. They can write down their wishes about the medical treatment they want or don’t want. The person making the decision on their behalf can use this as guidance.

The person with dementia may not meet the above criteria. Families, friends or carers can make choices on their behalf. The values and expressed wishes of the person with dementia should guide the carer making the choice.³ The person with dementia may have made an Advance Directive (legally binding document stating their wishes for treatment). The carer is legally bound to follow the Directive.³

Questions to ask your doctor

• What are the risks and benefits of starting medical treatment for distress?
• What happens if I don’t start medical treatment?
• What non-pharmacological options are there to help with distress?
  
  

References

1. Alzheimer’s Australia. Legal Planning and Dementia. Canberra: Alzheimer’s Australia, 2005.
   
2. Psychotropic Expert Group. Therapeutic guidelines: psychotropic. Version 7. Melbourne: Therapeutic Guidelines Limited, 2013.
   
3. Cartwright C. Planning for the end of life for people with dementia. A report for Alzheimer’s Australia. Canberra: Alzheimer’s Australia, March 2011.

People with dementia may have other medical problems or conditions. These may or may not be related to dementia. Each person is unique. The way these medical problems are managed might be different from the way they would be managed for someone who does not have dementia.

NPS MedicineWise and Dementia Australia (formerly Alzheimer's Australia) have written a fact sheet. It discusses how to manage other conditions along with dementia. It can help people with dementia and their families, friends and carers.

Read our detailed information on other conditions with dementia.

Older people often have more than one health problem. They might need a number of medicines each day to control their symptoms or treat their medical conditions. The more medicines you need, the greater your risk of having side effects and medicine interactions. Using more than one medicine of different kinds also makes it harder to use them all in the right way. Mistakes are more likely to happen.

The way our bodies deal with medicines and the effects medicines have on us changes with age. This can increase the risk of medicine-related problems. Having many health problems at the same time, or being frail, can further increase the risk of problems with medicines.

Find out more about managing medicines as you get older.

If you are living with dementia, you are also at high risk of medicine-related problems. This may be due to the effect of dementia on your memory and communication. You may not recall what the doctor or pharmacist said to you about your medicines. You may get confused about what the medicines are for, or when to take them.¹

For these reasons, older people with dementia are more likely to have medicine-related problems. As a person with dementia – or as a carer – it is vital that you practice good medicine management techniques. This will help you reduce this risk.

More information: 

• Managing your medicines
• Tips for good medicine management

References

1. Gillespie R, Harrison L and Mullan J. Managing medicines for people with dementia. 2015 (accessed 23 December 2015).

Dementia can affect a person’s memory, mood, communication and behaviour. This can make it harder for a person with dementia to manage their medicines well on their own. Families, friends and carers can use strategies to help the person with dementia take their medicines in the right way.¹

• Create a routine by keeping the same medicine times each day.
• Put medicines out at the same time as meals, eg, morning medicines with breakfast.
• If the person does not want to take their medicines, do something else for a short time. Try to give the medicines again a little later.
• The person may struggle to take more than one medicine at the same time. Try giving the medicines in two or more separate groups.
• The person may not like the taste or look of their medicines, or have trouble swallowing medicines. Ask your doctor or pharmacist if the medicines can be crushed. They can also give you a different formula, such as a liquid or skin patch.

Questions to ask your doctor

It is vital that you understand your medicines, the risks and benefits, and other treatment options available to you. Here are some questions to help you discuss your medicines with your doctor or pharmacist.

• 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?

More information about dementia or Alzheimer's disease:

• Dementia Australia (formerly Alzheimer's Australia)
• Dementia Behaviour Management Advisory Service (DBMAS)

For questions about medicines:

• Speak to your doctor or pharmacist
• Call NPS Medicines Line: 1300 MEDICINE (1300 633 424)

For information about where you can get more help, as a family member, friend or carer of a person living with dementia:

• National Dementia Helpline: 1800 100 500
• DBMAS 24-hour helpline: 1800 699 799

References

1. Gillespie R, Harrison L and Mullan J. Managing medicines for people with dementia. 2015 (accessed 23 December 2015).

• 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)

Dementia Australia support services

Dementia Australia

• Information, support, counselling, training and education for people with dementia, their family, friends and carers, as well as professionals in the field of dementia.
  
• Australian Government funded initiative
• National Dementia Helpline - 1800 100 500

National Dementia Helpline

• A telephone information, support and referral service provided by trained and experienced advisors. Available 9:00 am – 5:00 pm
  
• Australian Government funded initiative
  
• National Dementia Helpline and Referral Service - 1800 100 500
  

Living with dementia program

• People who are living with memory loss who have completed a Living with dementia program
  
• Australian Government funded initiative. Call Dementia Australia to discuss costs associated with the Living with dementia program and support group
  
• Dementia Australia via the National Dementia Helpline - 1800 100 500
  

Stepping out groups

• Social and activity-based groups for people in the earlier stages of memory loss
  
• Dependent on individual circumstances. Lunch and transport is provided
  
• Dementia Australia via the National Dementia Helpline - 1800 100 500

Other support services

Commonwealth Home Support Programme

• Support for older people who are mostly able to live and cope at home and require entry level care. Services may include: community-based social activities, transport to the shops or appointments, help with household jobs, personal care, home maintenance, home modification, nursing care
• The Australian Government subsidises services provided under the Commonwealth Home Support Programme. The out-of-pocket expenses for each service will depend on income, type and number of services required and will need to be negotiated with the provider. Talk to your local service provider for more details on costs
• My Aged Care contact centre can provide information on types of aged care services, eligibility, providers and costs - 1800 200 422. To find your local service provider, see My Aged Care website
  

Home Care Package

• Provides people with dementia tailored support services to help them stay in their own home. Some services that can be provided include: home support (eg, household jobs, transport to shops, doctors etc), personal care (eg, help with bathing, dressing, mobility), nursing, allied health and other clinical services (eg, hearing and vision services), care coordination and case management
  
• The fees depend on the level of care (level 1–4) and need to be negotiated with the service provider. There may also be an income-tested care fee.
  Find out more about Home Care costs and fees.
• To find out more about how to access Home Care Packages, see My Aged Care website

Carers Australia

• Information, support, education, training, counselling, planning and referrals. Provides services such as: Carer Advisory Service, National Carer Counselling program, Young Carers Program, Young Carers Bursary Programme
  
• Free call
  
• Carers Australia - 1800 242 636 (during business hours)
  
• Young carers (support for carers younger than 18 years) - 1800 242 636 or Young carers website
  

Commonwealth Respite and Carelink Centre

• Aged care and dementia services such as support groups, meal and nursing services, day care centres, household support services and respite providers in the local area
  
• The Commonwealth Respite and Carelink Centre can provide more information on the costs associated with respite care
  
• Commonwealth Respite and Carelink Centre - BH: 1800 052 222, AH: 1800 059 059
  

My Aged Care

• Information and advice on accessing aged care services, eligibility, assessment and costs
  
• Free call
  
• My Aged Care contact centre - 1800 200 422
  

Dementia behaviour management advisory service (DBMAS)

• A 24 hour service that provides family and carers of a person with dementia support, advice and strategies on how to cope with changed behaviours
  
• Australian Government funded initiative
  
• DBMAS - 1800 699 799
  

Advocacy services

• Information about rights and responsibilities with respect to aged care; listen to concerns; help resolve problems or concerns with aged care service provider; refer to other agencies if needed
  
• No out-of-pocket expenses
  
• The National Aged Care Advocacy Line - 1800 700 600

Peer support groups for people with dementia can be a good chance to share experiences, get support and develop management tools within a social context.

For more information on support groups and/or services in your state or territory call the National Dementia Helpline on 1800 100 500 or see the Dementia Australia website.

Support groups for family, friends and carers

Carer support groups provide carers with:

• support and allow carers to meet others in a similar situation to share ideas, management tips and techniques
• relevant dementia education and information
• the benefits of social outings with others in a similar situation
• information on local community services available
• a chance to learn health and wellbeing strategies (eg, relaxation and managing stress) and to learn how to
• cope with issues and other emotions (eg, loss, grief, guilt, resentment, anger, relief).

To find a local carer support group contact the local state or territory Dementia Australia office or call My Aged Care on 1800 200 422.

Education and training services available

Dementia Australia provides a range of workshops, and information and education courses for people with dementia and their family, friends and carers. A number of these courses and workshops are provided free of charge as they are funded by the Australian Government, however a donation is requested for attendance.

Topics that may be covered in the courses and workshops include:

• understanding diagnosis, symptoms and impact of dementia
• adapting to change
• practical strategies
• planning for the future
• effective communication
• understanding and responding to behaviours
• understanding grief and transition to care
• looking after yourself
• relationships with family and friends
• legal issues.

For more information on training courses and workshops contact the local state or territory Dementia Australia office.