Information for carers of people living with dementia

Information for Carers

Being a carer can be challenging and sometimes overwhelming, but it can also be immensely rewarding. Whether you look after someone for a few hours a week or full time, you play a vital role in the health and wellbeing of the person you care for, and it’s just as important to look after yourself too.

The first step may be to recognise that you are now a ‘carer’ - for many people this is a painful process. There is a variety of help and support available to you as a carer, and practical strategies you can use every day.

Help & Support


Information and education

There is a large amount of information and education available online about understanding dementia and the specific condition that the person you care for has been diagnosed with.

Some of these sources include:

Alzheimer’s Australia 
Alzheimer’s Queensland 
Better Health Channe
Ozcare


Support and services

Care services
You and the person you care for may be eligible for a range of government-subsidised services such as:

Carers Gateway
The Australian Government’s Carer Gateway makes it easier for carers to access advice, information and connect with services in their local area. Call the Carer Gateway on 1800 422 737 or visit their website

Benefits and entitlements
The Australian Government provides a number of payments and allowances to eligible carers. Contact Centrelink on 132 717 or visit the Department of Health & Human Services website to read about available benefits and eligibility requirements.

Legal services
If you, or the person you care for, needs the help of a solicitor for an Enduring Power of Attorney or a Will, contact the Public Trustee of Queensland on 1300 360 044 or visit the Public Trustee website

Your Health & Wellbeing


Taking breaks

It’s important to take regular breaks and maintain an active life by visiting friends and having hobbies. If you find it difficult to do this, home and day respite care services can assist by looking after the person you care for while you are taking some time out, doing chores, or even going to work.


Support groups

There are a number of face-to-face and online social and support groups for carers available in Queensland. Read more about support groups.

Looking after yourself

It’s easy to forget about your own health when you’re looking after someone else, but keeping active and maintaining your health also benefits the person you care for.

  • Eat a balanced diet. A dietitian can help you to create a menu that works for both of you
  • Take regular walks or other forms of exercise a few times a week
  • Drink lots of water
  • Ensure you are getting 7-8 hours of sleep per night
  • Ask for help if you are unwell and need someone to step in as carer. You may be able to use home respite services or residential respite

Practical Strategies


Home safety

In our section for people living with dementia, we suggest a number of small adjustments that can be made to a home to aid a person’s memory. If the person you care for has started to have problems operating appliances or stay safe in their home, there are a number of additional things you can consider, keeping in mind that a familiar environment is essential for people living with dementia and changes should be subtly introduced.

  • Ensure the house is well lit and not cluttered
  • Look for trip hazards such as rugs and cables, and either secure them or remove them
  • Install safety switches
  • Ensure that the kettle and other appliances automatically switch off
  • If you live in an older house, consider turning down the thermostat to reduce the temperature of hot water from taps
  • Secure hazardous chemicals and medications
  • Consider installing hand rails, shower/bath seats, nightlights

An occupational therapist can help you to assess your home and suggest changes and equipment that might be of benefit to the person you care for, and you may be eligible for government subsidies for the service.


Communication

Communication is something we often take for granted. Losing the ability to communicate can be one of the most frustrating and difficult problems for people with dementia and their families and friends.

Every person with dementia has a unique experience with the condition and difficulties experienced with communicating thoughts and feelings can be different for each individual, and may even change day to day.

  • Communication problems for the person living with dementia may include:
  • Difficulty in finding a word and using familiar words repeatedly. A related word might be given instead of one they can’t remember
  • Inventing new words to describe familiar objects
  • Problems organising words logically
  • Losing their train of thought
  • Understanding only part of what you are saying to them
  • Deteriorating reading and writing skills
  • Responding inappropriately in conversation, such as interrupting at the wrong time, using swear words, or ignoring the person speaking to them
  • Difficulty expressing their needs and emotions
  • Reverting back to their native tongue if they are bi-lingual

It is important to check if a person’s communication problems are due to impaired vision or hearing. Having regular eye and hearing checks will help with this. If the person already has hearing aids or glasses, check them regularly to make sure they are functioning correctly and glasses are clean.

Tips for communication:

  • Communicate in a positive manner, using warm facial expressions and appropriate eye contact. Communicate feelings of worth and affection
  • Talk in a quiet environment free from loud background noises such as the radio or TV
  • Approach the person from the front and use their name when talking to them
  • Give the person your full attention when having a conversation
  • Let the person know you are listening and trying to understand what is being said
  • Give the person time to think about how to describe whatever they want to say. Be careful not to interrupt and keep in mind that this process can be difficult for some people who are used to speaking fluently
  • If the person uses the wrong word or cannot find a word, try guessing the right one
  • Focus on the feelings, not the facts. Look for the feelings behind the words
  • Use short, simple sentences. Speak slowly and remember you are speaking to an adult
  • If the person doesn't respond, wait a moment and then ask again
  • Give simple explanations as complicated explanations may not be clearly understood
  • Avoid criticising, correcting, and arguing

Ozcare's dementia advisors have created a booklet called Practical Tips for Communication and Social Events booklet for you to download, print, and use as you need.


Behaviour changes

A person living with dementia can experience a number of memory, behaviour, movement, and language symptoms which can change day to day, or even during the day. This includes changes to behaviour which can sometimes be challenging.

It’s important to remember that behaviour is a form of communication, and behaviour changes can be caused by symptoms, the person’s environment, or being unwell from a virus or other condition.

Knowing the particular reasons or triggers for a person to display unusual behaviour will help you and the person you care for to understand what is happening.

Causes of behaviour change
Always discuss concerns about behaviour changes with your doctor, who will be able to check whether there is an underlying condition, such as:

  • Infections
  • Side effects from medications
  • Depression or anxiety
  • Vitamin deficiencies
  • Hormone deficiencies

Strategies

  • The person with dementia may have difficulty expressing their needs and desires. Try and identify what it is they would like
  • Speak to the person slowly and calmly with a reassuring voice
  • Provide a calm environment in which the person can follow a familiar routine. Plan a predictable daily routine, taking advantage of the person's best time of day to undertake tasks such as bathing and dressing
  • Try to keep the environment familiar. People living with dementia may become upset if they find themselves in a strange situation or among a group of unfamiliar people where they feel confused and are having difficulty functioning

Minimising the distress of behaviour changes

  • Involve the person in a meaningful activity, for example play their favourite music or reminisce about a happy occasion that they remember
  • Make a list of activities, people, or places that the person enjoys now and do these things more frequently
  • Encourage the person to exercise regularly by walking or swimming
  • Join a support group, which may assist you and the person living with dementia to understand the condition more by speaking to others with similar experiences

Ozcare's dementia advisors have created a booklet called Understanding and Responding to Changes in Behaviour for you to download, print, and use as you need.


Activities

Depending on the symptoms that are currently being experienced, your day might be currently very full or feel lacking in activity. When planning your day, there are four key activities that you can consider and add to your schedule.

Work
Everyone needs to have purpose, whether it be helping others, completing tasks, or being able to use our best skills and abilities. All of these things will help the person living with dementia feel valued and useful. You can sit together to make a list of suitable activities that can done independently and add these to your routine.

Self-care and rest
It is important that the person living with dementia stays independent for as long as possible, and you can assist them to do this supporting them to complete self-care tasks independently, where possible. This includes their morning routine, doing the weekly shopping, managing bills, and cooking meals.

Leisure activities
The best leisure activities for a person living with dementia will come from their life long interests such as swimming or dancing. When planning things to do during the day, talk to the person and consider all the things they enjoy doing.

If you would like some ideas of new things you can do, consider:

  • Downloading some activities on your iPad or other tablet
  • Singing, listening or dancing to music, such as new music from another culture, well-known songs such as the wedding march or music from past decades
  • Socialising with a small group, or one-on-one
  • Reading, playing games, and doing puzzles
  • Exercising, walking, and gardening
  • Watching movies or television
  • Craft activities and themed meals for a special event that month, such as Easter or St Patrick’s Day
  • Painting a picture or drawing

If you like to travel, Ozcare's dementia advisors have created a booklet called Road Trips With Dementia in Mind for you to download, print, and use as you need.

Reminiscing
Your story begins from the day you were born. Recording a person's journey through life can be fun activity and reminiscing can continue in future generations. The distant past can be, at times, more current for the person living with dementia and reminiscing about their life history can encourage them to sit, talk, and share happy moments.

Put together a life story book by collecting old photos, letters, postcards, newspaper cuttings, and other memorabilia into a presentation book.

Include photos of when they were children, of family and friends, and special events in their life that might trigger happy memories such as their wedding day, the birth of a child or grandchild, or holidays. Add a short narrative under each photo that you write together.

Ask family and friends to contribute to the story and add photos and memorabilia they would like to share.

Depending on what the person would like, you can create the life story book as a group with friends and family or just the two of you.


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