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Resources for people with dementia and their carers

Medicines do not have to be part of your care plan for dementia, and 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 downloadable materials to 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:

  • plan a conversation about dementia with the people you choose, for example, your family and friends and health professionals involved in your care (eg, GPs, pharmacists, specialists, nurses)
  • find out about advanced care planning
  • find out what support is available 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.

To order a printed copy of this booklet please contact the Dementia Australia office in your state or territory (formerly Alzheimers Australia). 

Fact sheets

The following fact sheets include information and tips to help with decisions 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.

Alzheimer’s Australia
National Dementia Hotline
NPS Medicines Line


Strategies to address distress

What is distress?

Every person with dementia is an individual who will react in their own way to events or factors in their environment.1 People with dementia can become upset and distressed as a result of medical, physical, emotional or environmental factors2 and these expressions are often indicative of an unmet need. It is important to understand why people with dementia become distressed and find ways to help or prevent it.3 Health professionals refer to expressions of distress as behavioural and psychological symptoms of dementia (BPSD).

Reasons for distress

There may be one or more underlying factors which can lead to distress or a feeling of dissatisfaction in people with dementia. Factors contributing to stress may be medical, physical, environmental or emotional (see below).2 The quality or practice of care given to the person with dementia may also contribute to emotional stress, for example, use of physical restraints or disregarding their social and cultural needs.2

MedicalPhysical Environmental Emotional

Sleep disruption/ deprivation

Other medical conditions such as depression, urinary tract infection

Delirium

Chronic illness

Discomfort such as pain, fever or constipation

Not able to communicate

Immobility

Complicated tasks

Allowing strangers into the home

Change to physical environment

Limited care

Fear

Fear

Lack of respect, recognition or trust in social interactions and relationships

Feelings of worthlessness or sadness

Grief

Loneliness


Strategies to overcome distress

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 suggestions to help prevent distress.4

Communication Personal care deliveryThe care environment

Speak slowly and calmly

Avoid point finger-pointing, scolding or threatening

Make eye contact where appropriate

Use person’s name/title

Consider cultural background when communicating

Avoid correcting mistakes

Do not disagree

Respect the person’s thoughts even if incorrect

Consider pain as a reason for distress

Allow for some privacy

Talk to the doctor about other illnesses such as constipation, urinary tract infection, headache etc that may be reasons for distress

Offer choices

Ensure routine activity

Avoid tasks that trigger stress

Ask the person to take part in an enjoyable activity

Be flexible with meal times

Ensure the environment is not noisy or cluttered

Declutter table settings


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.

Medicines to manage distress symptoms

Managing emotional stress through simple strategies and changes in the delivery of care is primarily recommended for addressing mood or distress symptoms.1 If medical treatment is necessary, your doctor will tailor treatment to your circumstances, for example, prescribing antidepressants for moderate to severe depression.2 

Medicines should be reviewed regularly by a health professional and when to review depends on the medicine. Talk to the doctor or other health professional about incorporating medicine reviews into a care plan. Using a medicines list can help with managing medicines. Talk to the doctor or other health professional about the active ingredient and brand names of the medicines you are taking.

Groups of medicines that may be used to help reduce symptoms of distress are described below.1,3,4

Anticholinesterases

Target distress symptom  Common side effectsEfficacy

agitation

diarrhoea, anorexia, insomnia, vivid dreams, urinary incontinence

delays cognitive decline by 6 months in 25%– 50% of people with dementia, and 1 year in 12%–20% of people with mild to moderate Alzheimer's disease


Other medicines for Alzheimer's disease 

Memantine

Target distress symptom Common side effectsEfficacy

agitation

confusion, drowsiness, insomnia, hallucinations

moderately slows cognitive decline


Antipsychotics

Target distress symptom  Common side effectsEfficacy

psychosis, aggression

sedation, anxiety, restlessness and agitation, pneumonia, increased heart rate. Has been associated with increased risk of death

of limited use for people with dementia


Antidepressants

Target distress symptom  Common side effects Efficacy 

depression

sleep disturbance, headache, drowsiness, tremors, nausea, anorexia, urinary incontinence

can take 2 weeks or more to see improvements in mood


Anxiolytics

Target distress symptom  Common side effects Efficacy 

agitation, anxiety, sleep disorder

falls, confusion, rebound insomnia

effective for treating anxiety but recommended for short-term use only (2–4 weeks)

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).

Treatment decision-making rights

A person with dementia (and you, as a carer or family member of a person with dementia) has a legal right to refuse treatment.

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

  • understand the information given
  • can weigh the risks and benefits of treatment, and
  • can communicate the decision to another person.1,2

Under these circumstances the person with dementia can initiate a discussion with their doctor on the risks and benefits of medical treatment for distress and have the doctor record their wishes about treatment on their medical record.

If the person is unable 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 and the person making the decision on their behalf can use this as guidance.

Families, friends or carers can make decisions for the person with dementia if they do not meet the above criteria. Carers making a decision on behalf of the person with dementia should be guided by the values and expressed wishes of the person with dementia.3 If the person with dementia has 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.

Other conditions with dementia

People with dementia may experience other medical problems or conditions that may or not be related to dementia. Each person is different, and 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 developed a fact sheet discussing management of other conditions alongside dementia, for people with dementia and their families, friends and carers.

Read our detailed information on other conditions with dementia.

Medicines-related problems in people with dementia

Older people often have more than one health problem and 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 experiencing side effects and medicine interactions. Using multiple medicines of different kinds also makes it more difficult to use them all correctly, and more likely that mistakes will occur.

The way our bodies deal with medicines and the effects medicines have on us changes with age, which 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 due to the effect of dementia on your memory and communication. You may not remember what the doctor or pharmacist said to you about your medicines, or get confused about what the medicines are for or when to take them.1

For these reasons, older people with dementia are particularly likely to experience medicine-related problems. As a person with dementia – or as a family or friend carer – it is vital that you practice good medicine management techniques to minimise this risk.

References

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

Tips for good medicine management

Good medicine management means taking the right dose of the right medicine at the right time, and avoiding inappropriate or unnecessary use of medicines. You can take steps to practice good medicine management – for yourself or a person you care for – and reduce the risk of medicine-related problems.

Ask for a medicines review

It is important to have your medicines reviewed regularly, especially if you are an older person taking multiple medicines. A medicines review can help improve your treatment and prevent medicine-related problems.

On the day of the review, have all the medicines you are taking available for the doctor or pharmacist, including prescription medicines, non-prescription or over-the-counter medicines (such as paracetamol or ibuprofen), and medicines bought at the supermarket or health food store (such as vitamins or supplements).1 If you have an up-to-date list of all of your medicines, show it to the doctor or pharmacist.

When your doctor or pharmacist reviews your medicines, they will gather information about all your medicines, any problems you are having with your medicines, your current health and your treatment goals. Based on this information, your doctor or pharmacist may recommend changes to your medicines (such as stopping a medicine or changing the dose) and work with you to agree on a management plan for your medicines. A medicines review is also a good opportunity to learn more about your medicines and ask any questions you may have.

Keep a list of your medicines

An up-to-date medicines list is helpful to keep track of all the medicines you are taking and other important information such as what a medicine is for, the dose, when and how to take it, and when you started.

A medicines list is also useful to take to appointments with doctors or other healthcare professionals such as dentists, so that everyone involved in your health care knows all the medicines you are taking. This list also provides vital information about your medicines in the case of an emergency.

When creating a medicines list, it is important that you record all of the medicines you are using including prescription, non-prescription (over-the-counter), vitamins and minerals, herbal and natural medicines.1,2 Your doctor or pharmacist can help you create your medicines list or answer any questions you may have.

There are a number of resources available to help you create a medicines list that suits your needs. NPS MedicineWise offers two types of medicines lists:

  • A paper medicines list you can fill in and carry
  • the MedicineWise smartphone app that you can use on your phone.
Find out more about medicines lists and about the MedicineWise app.


How carers can help with medicine management

Dementia can affect a person’s memory, mood, communication and behaviour. This can make it difficult 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 correctly.1

  • Create a routine by keeping the same medicine times every 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 and then try to give the medicines again.
  • If the person finds it difficult to take many medicines all together, try giving their medicines in two or more separate groups.
  • If the person doesn’t like the taste or look of their medicines, or has trouble swallowing medicines, ask your doctor or pharmacist if the medicines can be crushed or given in a different formula, such as a liquid or skin patch.

Questions to ask your doctor

It is important that you understand your medicines, the associated 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:

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).

National dementia support services available

There are a number of national support services that are available to you and those closest to you. These services provide support such as:
  • 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 to 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. The service provider may ask for a daily fee of up to 17.5% of the single basic Age Pension ($137.76/person/fortnight until 19 March 2016). There may also be an income-tested care fee if you have a yearly income of: $25,487.80 (individual), $25,019.80 (individual income of member of couple but separated due to illness), $39,561.60 (combined income if in a relationship and living together). The Home Care Fee Estimator can help provide you with an estimate of costs of Home Care Package.
  • To find out more about how to access Home Care Packages, see My Aged Care website

National support services for carers

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

Support services for you and your family, friends and carers

Peer support groups for people with dementia can be a good opportunity 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
  • an opportunity 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.

A free online education workshop is available that provides information about changed behaviours that indicate pain in a person with dementia.

12 min read

Date published: 22 January 2017
Reasonable care is taken to provide accurate information at the time of creation. This information is not intended as a substitute for medical advice and should not be exclusively relied on to manage or diagnose a medical condition. NPS MedicineWise disclaims all liability (including for negligence) for any loss, damage or injury resulting from reliance on or use of this information. Read our full disclaimer. This website uses cookies. Read our privacy policy.