Carers Program
Carers Program

Carers of People with Dementia

What is Dementia?
The term dementia is used to describe the symptoms of a large group of illnesses. It is not one specific disease, and there are many different kinds of dementia. In the early stages, the first thing a person with dementia, or their Carer, may notice is unusual memory loss and confusion. If these persist, they are probably the first signs of dementia. In everyday life, dementia can cause ongoing problems with a person's thinking, behaviour and ability to do normal tasks, such as showering, dressing, meal preparation and walking.

Over time, dementia will cause continuing decline in memory, understanding, logic, social skills and normal emotional reactions. Towards the end of the disease, it affects a person's ability to manage their personal and financial affairs; at this time, some people may need full-time care in an aged care facility.

Types of Dementia
There are different forms of dementia. You may have heard of Alzheimer's disease and vascular dementia. Alzheimer's is a progressive illness which attacks the brain; vascular dementia is caused by problems of circulation of blood to the brain, caused by small strokes. These are the two most common types of dementia. Dementia may also occur as a result of other diseases, such as Parkinson's or Huntington's, HIV/AIDS or drinking too much alcohol.

Caring for Someone with Dementia
For someone with dementia, significant problems can occur with their ability to plan, concentrate, communicate and understand. At least in the moderate or advances stages, people with dementia will benefit from having a Carer. They can be vital in assisting the person with dementia to communicate with others when they are in new or unfamiliar surroundings such as doctors' surgeries, shopping centres or hospitals.

Often Carers live with the person with Dementia, while others do live alone but have a Carer and/or Care workers from a community service(s) who visit regularly. Dementia is not a normal part of ageing, but is more common after the age of 65. Thus, many people with dementia (and their Carers) are elderly. They may have age-related illnesses, as well as dementia, and need a lot of support from family and services.

Due to these factors described above, Carers of people with dementia face challenges that at times may be quite overwhelming.  It is important, therefore, that YOU get help and support as well as the person you care for.

Dementia Services in Sydney Local Health District

Inner West Dementia Support Service
The Dementia Support Service is an in-home respite service for Carers of people with dementia providing them with a regular break from their caring role.

Contact: Maria Barzanji or Kit Choi on 9767 5235 or 9767 5236 or email Maria.Barzanji@sswahs.nsw.gov.au   or Kit.Choi@sswahs.nsw.gov.au   

Dementia Monitoring Services
Dementia Monitoring Services provide help to people with Dementia who are living alone, have a low income, poor mobility or lack of access to transport and would need low or high level residential care if basic support services were not provided.

Dementia Cafes
"Dementia Cafes" are regular, organised, informal gatherings for People with Dementia and their Carers held in cafes in the community. They provide a social atmosphere where carers and the people they care for can relax over a cuppa with others in similar circumstances. Dementia Cafes in the SLHD are listed below:

On Track: Kokoda Cafe Concord (SLHD DAS)
DeSteel: Steel Park Cafe Marrickville (SLHD DAS)
YoungView: Envy Cafe Summerhill (SLHD DAS)
Turning Point: Ashfield (Baptist Homes)
Cafe by the Lake (Riverwood Community Centre)

Day Care Centres
Day Care Centres in SLHD are:
Kalparin - dementia specific
Kindalin - aged and frail
Karinya - mainstream
Carter Evans Day Centre on 9557 0032 at 10 Victoria St, NEWTOWN

The Ella Centre
The Ella Centre is located at 58A Dalhousie St, Haberfield and is a non-government agency that provides day care and other services for the aged and frail and people with dementia. It also provides other respite services and services for people with Younger Onset Dementia.
Call 9798 5140 or go to: www.ella.org.au/

Other Dementia Services and Support

Alzheimer's Association provide a range practical information, education and support as well as a 24/7 Helpline on 1800 272 3900
http://www.alz.org/what-is-dementia.asp

Dementia and Hospitalisation - Top5
TOP5 is a patient-centred approach that promotes dialogue between staff and the carer of a patient/client who has a cognitive impairment. The carer's knowledge in communicating with, and caring for the patient is used to identify 5 simple strategies that will help workers to communicate with and care for the patient while they are in hospital, in respite care (e.g. a day care centre or in-home respite) or a Residential Care Facility (Nursing Home). In dialogue with a staff member, the Carer identifies these 5 strategies which are then recorded in bed chart notes.

The strategies can vary a lot from person to person and may help with, for example, recognising when the patient/client needs to go to the toilet, how to settle them when they become agitated or distressed or what a particular behaviour of the patient/client means and how to deal with it.

Top5 was initially developed by Central Coast LHD Carer Support for use in hospital wards with patients who had dementia but its use is now being extended to other situations and to care for people with other types of cognitive impairment. The NSW Ministry of Health's Clinical Excellence Commission has introduced Top5 to a number of public and private hospitals across NSW. Ward 8W1 and RPA hospital is now participating in this trial and other hospitals in SLHD are also adopting the tool. If the person with Dementia you are caring for is to be admitted to hospital, ask if Top5 is being used in the ward where they are admitted.

Some of the early benefits reported in using Top 5 for the patient, Carer and the staff are:

  • A quicker recovery and therefore a reduced hospital stay
  • Less agitation, frustration and distress
  • More effective communication and increased ability to relate
  • Increased staff awareness of the Carer's role
  • Increased staff interest in the information provided by the Carer
  • Reduced incidence of adverse events (such as falls)
  • Improved safety for patients and staff
  • Improved staff/patient and staff/carer relationships

Stages of Dementia
Dementia is often referred to being in early, moderate or advanced stages. These stages are just labels and every individual is different and every family's experience of dementia is different. It can help to know the terms that other people use, especially health workers, and to be familiar with what they mean

In the Early stages of dementia, independent living with caring family support is possible.  The help a person with dementia needs in this early stage is often practical in nature; e.g. reminders about doctor or dental appointments and keeping them in contact with friends and other social activities.  Keeping the person's memory stimulated is important and going to Dementia Cafes, family gatherings or other community activities can help to do this.

It's important to build a supportive circle that might include family, friends, support groups and specialised services for both you and the person with dementia. With these in place, the person can be more involved in decisions affecting their loss of independence such as giving up driving or advance planning for their own future care. The early stages of dementia may be mild and can last for years but can still be challenging for everybody.

In the Moderate stage, extra family support, as well as support from outside services is usually needed. This stage is usually the longest and forgetfulness becomes more of a problem. You may see the person start to struggle with:

  • dressing themselves;
  • remembering to turn off the oven or lock doors and;
  • recalling the names of newer family members like grandchildren.

They may also start to act in unsafe ways such as wandering. You might also see a change in their personality or mood which is not like "their usual self". For example, becoming more talkative when they used to be reserved or vice versa. It may be helpful to try out ways to make up for their failing memory:

  • buying easy clothes to put on (such as elastic waists or no buttons or zips);
  • using photo books to talk with them about people and places they do recall;
  • encouraging the person to do soothing activities such as art, music or gardening.

This may help to reduce their frustration as well as yours and improve their quality of life.

When trying new ways to help the person, staying calm and using simple language can make things easier. This can be very difficult, though, especially when talking about keeping them safe.As a Carer it will become increasingly important to maintain your own health and wellbeing Using respite to take a break is a good way to start this.

In Advanced stages of Dementia, the person will need a lot of support. This stage of dementia can be very confronting for Carers and other family members in both practical and emotional ways. The person may develop swallowing problems, have little appetite, become incontinent, and have trouble walking. In seeing these changes, it is normal to feel sad and to grieve for the person as they used to be.

Eventually, constant supervision will be needed and you might need to consider moving the person you care for into a residential aged care facility (nursing home) to receive 24 hour care. While your caring role will change in this situation, you can still be involved in their physical care. This could be by helping nursing staff with personal care such as washing their hair or bruising their teeth. As you know the person best, let nursing staff know if you think they are in pain and may need medication adjusted.

It is equally important to spend time on activities that you know the person enjoys such as playing their favourite music, looking at old photos, or reading to them. Even holding their hand may be of comfort to both of you. This may help you feel you are maintaining the person's individuality and preserving their dignity.

Challenging Behaviours
The behaviours that a person with Dementia might develop are often of concern to Carers and challenging for them to deal with. They include repetition, confusion, depression, hallucinations, suspicion, aggression, agitation, poor sleep, and wandering and becoming lost.Wandering and other behavioural issues often start at dusk and continue into the night and you may hear care staff refer to this as "sundowning".

As speech pathways in the brain shut down, the person with Dementia is unable to tell you when they have discomfort within their body, their senses or their emotions. A person showing aggression or confusion that has appeared suddenly needs a thorough medical examination as is important to try and identify the reasons for this behaviour. They may be a sign of physical discomfort due to pain, a urinary tract infection, stress from an overwhelming environment, or poor or disrupted sleep. These issues are common for people with Dementia.

Trying to communicate anything without easily recalling words can be very frustrating. A person with Dementia needs your time and patience as they will have difficulty explaining their thoughts and feelings to you. Try to communicate using simple terms and recognise that challenging behaviours are often not meant personally but are an indication of something else that is affecting the person.

You may find it helpful to keep a record or diary of when such behaviour occurs. This can help both you and health staff identify patterns and triggers, reduce their occurrence and therefore provide better care to the person.

What you might see

Possible Causes

Techniques to try

Aggression and Anger

  • Pushing you away;
  • Being aggressive;
  • Yelling and calling out;
  • Protecting part of their body
  • Fear and/or confusion;
  • Being in a position that's
    creating pressure;
  • Pain;
  • Tiredness;
  • Side effects from their
    medication.
  • Don't try to restrain the person;
  • Avoid showing any threatening body language;
  • Give them pain medication or Panadol;
  • Try to adjust their position
  • Check if they aren't too hot or cold
  • Do soothing activities e.g.
    play music, use scented oils.

Agitation and Anxiety

  • Pacing;
  • Looking anxious;
  • Pulling at their clothes
  • Being in an unfamiliar place;
  • Being with people they don't recognise;
  • Needing to use the bathroom;
  • Being hungry or stressed.
  • Show the person things in their environment;
  • Introduce unfamiliar people. Ask these people to continue to repeat their name to the person;
  • Take them to the bathroom;
  • Offer a drink/food and help them  to eat/drink.

Confusion and Disorientation

  • Looking around
  • Confused facial expressions
  • Pointing.
  • A urinary tract /other infection
  • A change in routine or the
    environment;
  • Side effects from their
    medication;
  • Advancing disease.
  • Ask the doctor/ nurse to assess for an infection;
  • Be consistent with routines and activities they enjoy, and introduce needed changes slowly;
  • Use visual cues like photos
    to help the person remember;
  • Use a calm tone  to reassure them

Depression

  • Sitting alone;
  • Withdrawing when others are around them;
  • Not joining in with activities;
  • Sleeping too much or too little;
  • Appearing sad;
  • Crying.
  • Not being properly assessed for depression
  • Side effects from their medication;
  • Pain;
  • A new change leading to confusion.
  • Organise a medical check-up
  • Encourage the person to take any medication prescribed as treatment;
  • Encourage the person to do
    activities they enjoyed before;
  • Don't tell them to snap out of it;
  • Celebrate small successes as
    their mood improves;
  • Seek support from community groups and services ;
  • Acknowledge the person's feelings;
  • Reassure them they will not be abandoned and you care about them.

Disinhibited Behaviours

  • Inappropriately touching
    themselves or others
  • Undressing at inappropriate times
  • Being rude or tactless.
  • Forgetting what appropriate behaviour is;
  • Confusion over other people's identity (e.g. mistaking someone in the room for their spouse);
  • Undressing due to discomfort or itchiness
  • No longer understanding that being polite or discreet is important.
  • Try not to take behaviours personally or be embarrassed, as you may distress the person;
  • Stay calm and explain that it isn't the right time for certain behaviours;
  • Introduce people in the room clearly.

Hallucinations

  • They may not focus on you;
  • Making strange or frightened noises;
  • Pointing at things that are not there.
  • Dehydration
  • Medication side effects;
  • Moving to the Advanced stage of dementia;
  • Sleep deprivation;
  • Eyesight or hearing problems.
  • Check that reminders and assistance is given to drink
  • Use a calm tone for reassurance
  • Try to focus the person with something they enjoy;
  • Check for things in the environment they could be misinterpreting;
  • Seek medical attention to determine the cause & if anti-depressants are needed.

Poor Sleep & "Sun downing"

  • Increased agitation in the evening;
  • Yawning;
  • No energy;
  • Lethargic and slow movements.
  • Due to the persons' 'internal body clock' no longer working properly sleep disturbances occur;
  • Darkness can frighten those with Dementia;
  • Confusion and disorientated due to an inability to separate dreams and reality.
  • Be aware of your own fatigue. Try not to show negative non-verbal behaviours that will distress the person;
  • Stick to a routine bedtime and increase activity and exercise during the day;
  • Keep the environment well-lit and comfortable;
  • Avoid stimulants like caffeine & sugar.

Memory Loss

  • Not remembering people;
  • Not understanding how to do
    simple and familiar tasks;
  • Memory recall and loss are a symptom of Dementia.
  • The brain networks are affected by the illness, the person simply isn't capable of remembering some things.
  • Stay calm, try not to be frustrated and accept that the person isn't deliberately trying to upset you.
  • Try to use prompts, but don't criticise the person as this may upset them further.

Repetition

  • Repeating the same stories, actions or words over and over.
  • The person simply may not remember that they've already completed an activity or told a story. This is a symptom of their illness;
  • Certain words, stories or actions may comfort them and help them make sense of their situation.
  • Be patient. Repetition is frustrating, but the person is not trying to frustrate you.
  • Try to distract the person and comfort them, as they may be acting out of anxiety
  • Avoid being angry or critical, as that may upset the person.

Wandering

  • Leaving the house alone;
  • Getting lost;
  • Being unable to stop roaming the home.
  • Boredom or too much energy;
  • Confusion and disorientation, especially in a changed environment;
  • Not recognising where they are and searching for familiar things;
  • Being hungry or in need of using the bathroom, but not remembering the layout of the home;
  • Being in pain.
  • A habit triggered by the time of day or an activity, for instance leaving for work after breakfast.
  • Regular physical check-ups will keep an eye on causes of pain or discomfort, like Urinary Tract Infections which can cause changes in mood and cognition as well as comfort;
  • Pay attention to effects of medication;
  • Remove and store 'prompts' like umbrellas, handbags and walking shoes so that the person doesn't become confused;
  • It may be helpful to ensure that the person is carrying personal identification at all times, such as a medical alert bracelet.
  • If possible, move door locks to a place the person will not think to look (e.g. higher or lower.)

Information about Dementia on these pages is drawn from Alzheimer's Australia website