Caregiver support

There is no job more difficult than caregiving.

But there is no job more satisfying than being a caregiver.

Rule # 1 for caregivers: Look after yourself.

Where to begin

There is no way to sugar coat it – a diagnosis of dementia will change your life.

The journey through dementia is a long, emotional and ever-changing one. The person you knew is going to change and, as a caregiver, you must continually be adjusting to the changes.

The most important message to caregivers is to look after yourself. The reality is, a staggering 80 per cent of caregivers suffer with some form of mental illness as a result of neglecting self-care while caring for someone through dementia.

As a caregiver you must:

Because the process of dementia is a long and challenging journey, as a caregiver the key is to learn how to look after yourself so you are able to support your loved one throughout their illness. The truth is that you will be very aware of the changes they’re going through – they will not.

Be objective about the people around you

See the people around you in a new way. Think about the relationship each family member or friend has with the patient, then think about ways they can help you. Engage as many people as possible. Even an estranged son or daughter-in-law can be helpful, if they had a good relationship with the patient. It doesn’t hurt to ask if they’d be willing to spend an hour to visit every once in a while, and it could be a simple solution that works for everyone.

Understand… the behaviour is not personal

It’s very difficult for anyone to see their love one suddenly become aggressive, threatening or violent when they’ve always been a gentle, warm and kind person. Even though changes may be dramatic, it is important to understand that the behaviours are not personal – the ‘disease’ is causing the behaviours. The person is not choosing to misbehave. It’s not personal – it’s a defect of the brain.

Incorporate techniques and strategies to help you cope with the behaviours of your loved one.

Know your limits

  • It requires a shift in attitude to better understand, analyze and develop realistic expectations of the person with dementia because they may no longer be capable of doing what they once could do.
  • Although you never had to look after household chores (paying bills, making dinner, doing the laundry) you may be required to do these things now as your spouse or loved one loses their ability to handle such responsibilities.

Accepting difficult solutions to circumstances such as admittance to long-term care or institutionalization, where daily care is required as opposed to retirement home living. The first solution is to do our best to help you deal with behaviours in the home, but as the disease progresses and behaviours become more difficult to manage, the discussion of long-term care needs to be faced.

Get support at home

Find access to resources within your community. Difficult behaviours and stress are part of the journey through dementia. Pay attention to the following clues in your own behaviour:

  • Fatigue.
  • Low energy.
  • Lack of interest.
  • Interrupted sleep.
  • Apathy.

Ask for help

Support is very important. Involve the healthcare system, your family members and friends.

Watch this compelling caregiver series: A Caregiver’s experience with BPSD: Peter’s Story