Caring For A Person With Dementia

Living with dementia

If we remember that dementia is a disease occurring in the brain, then it is easy to see how behaviours of everyday living may be affected as the disease progresses.

The brain is the control centre of our body and is divided into lobes and each lobe does special things. If any part of the brain is sick or damaged through dementia, it will not be able to do the work that is required for that area.

As a result, as the disease progresses, dementia may impact on memory, communication, motivation, planning and organising, and carrying out of general activities of daily living.

Providing the best care and support for people living with dementia means we need to try and understand their illness and their behaviours from their perspective. That is, getting into the skin of what it might feel like to have dementia. We can think about:

  • What might it feel like not to remember where you are or what you are meant to be doing there?
  • What might it feel like not to recognise familiar things around you (including people)?
  • What might it feel like not to know what is expected of you in certain situations?

Thinking about these things and remembering that people with dementia do not have control over the way they are will help to provide care in a more person-centred way as well as manage changing behaviours.

Understanding these things will also assist us to appreciate that anxiety and fear may also be a feature of someone’s dementia.

Providing care and support in a loving and thoughtful way, and walking beside people on their journey with dementia, will go a long way to minimising those anxieties and fears.

Every person’s journey with dementia is different and individualised care is enhanced by knowing the individual's story and working within that context and with their perspective. That is the only way that true person-centred care can be used to enhance quality of life.

However, person-centered care may have very different meanings and may not fit Aboriginal and Torres Strait Islander cultures.

The concept of person-centredness is universal. However, person-centredness and personhood may have very different meanings in Indigenous cultures. Further, existing specific theories, models and frameworks may not be easily transferable to Indigenous cultures and communities. For example, Westernised approaches to person centred care tend to privilege the individuality of the person with dementia and family members. In sharp contrast, the notion of personhood in Australian Indigenous communities is not defined by individuality but by a deep connection to country.

There are ways we can care for people with changing or challenging behaviours that may work across cultures:

  • Try to know the person and their interests so that you can engage them in activities and help them maintain purpose and connection to community.
  • Understand that the person living with dementia and the person caring for them are not necessarily seeing the world in the same way. Try to get into the skin of the person living with dementia and recognise that you do not need to remember a moment to enjoy it. 
  • People don’t choose to have dementia, and people with dementia don’t purposely ask the same questions or carry out the same actions again and again – in their minds, they could be doing it for the first time. A challenge for carers is remembering this, and remembering that getting upset or frustrated can make the person more agitated or repetitive.
  • If people living with dementia become focused on more challenging behaviours, distraction can prove to be a valuable (and gentle) tool. Carers need to focus on the emotion behind the behaviour and ‘listen’ and interpret. Then a simple distraction “let’s go and do some painting now George” may be enough to lead the person away from something that is distressing them or others.
  • Keep in mind that challenging (or changing) behaviours are often an opportunity to express some emotion the best way the person knows how, as a result of the changes in their brains. This may include ways the person tries to communicate things like pain, so keep an eye out for any changes in behaviour that might actually be about the person’s physical, emotional or spiritual needs.
  • Dementia journeys are always changing, both for the person with dementia and their carers. Caring for someone with dementia can be really hard - getting support can make the caring role that little bit easier.

Caring for the carer

Caring for someone living with dementia can be an overwhelming task particularly as the disease progresses and decline continues.

Carers are often faced with seeing someone they love struggling and becoming more isolated while they themselves grieve the loss of the person: the way they were before the dementia. This can be very hard to explain to others who have never provided care for a person with dementia.

Caring often involves many emotions and is often increased by physical strain and stress.

All of this can lead to a high level of depression amongst carers. In fact, research tells us that carers of people living with dementia are a group of carers suffering from the highest rates of depression.

Carers can try and look after themselves by:

  • Socialising and interacting with others (individually and with the person living with dementia)
  • Have access to information and resources about services and options available to assist in care.
  • Understand and pursue options for respite to have some "time out" from caring tasks.

Future Planning
How a person with Dementia can make their decisions known

One of the things that can be good to do, while a person with dementia (or any person!) has the ability to make their own decisions, is plan for the future.

There are a number of formal documents that can describe a person’s wishes relating to their care, their belongings, or their future decisions about legal, accommodation or financial matters.

Wills

To make a valid will, you need to be able to understand the decisions you make about your assets and the effect these decisions will have, so it is better to make or update your will before being diagnosed with dementia.

A diagnosis of dementia does not automatically mean you have lost capacity to make these decisions for yourself.  However, if you are concerned about memory loss, or someone close to you has been diagnosed with dementia or another form of memory impairment, it is important to acknowledge the issue and obtain legal advice, or consult the Public Trustee, to help you create or update your will.

Power of Attorney and Enduring Power of Attorney

Appointing someone as your power of attorney gives them the legal authority to look after your affairs on your behalf. An enduring power of attorney becomes operational only when you are no longer able to make those decisions for yourself.

Powers of attorney depend on which state or territory you are in: they can refer to just financial powers, or they might include broader guardianship powers. You will need to check with your local Public Trustee to know what applies in your State or Territory.

Advance Care Planning

When our thinking functions get so sick that we cannot make decisions for ourselves, because of dementia or other things, we need our families and people we love to make decisions for us.

The important question though is: would your family, your doctor, your Aboriginal and Torres Strait Islander Medical Service or your Aboriginal and Torres Strait Islander Health Worker really know what you wanted for your health and lifestyle choices?

There is something available to help you plan for such times. It’s called ‘advance care planning’, and the first (and most important) step is just having a yarn about your health and ideas around health care. Letting everyone know what you want is the best way to influence the way you are cared for in times of illness and decline.

You can prepare a few other documents to help your legal appointees and family as you grow older, including:

  • An enduring power of guardianship that gives a person the right to choose where you live and make decisions about your medical care and other lifestyle choices, if you lose the capacity to make your own decisions.
  • An anticipatory direction records your wishes about medical treatment in the future, in case you become unable to express those wishes yourself.
  • An advance healthcare directive (or living will) documents how you would like your body to be dealt with if you lose the capacity to make those decisions yourself.

The documents you choose to draw up will depend on your situation, and the responsibilities you are happy to entrust to others, as well as the state that you live in. Please consider getting legal advice if you are not sure.

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