Being diagnosed with dementia can be a daunting experience for the person themselves, their family and their friends. It’s important to take time to come to terms with the diagnosis, but it’s also crucial to plan for changes that might come your way following the diagnosis.
Whether the person lives alone, or with family, bringing additional support on board over time can help them to continue living with independence, comfort and dignity. As a first step, creating a plan for what support they might need in the future is a great idea.
Changes in behaviour caused by dementia
Dementia can cause all sorts of different changes in different people. Brain cell loss can have a range of direct impacts, including low motivation and impulse control, lack of ability to focus and plan, and problems communicating appropriately.
Its effects can also be a little more oblique, and can make it challenging to care for a person living with dementia. For example, anger, frustration and disengagement can emerge when someone is overwhelmed by noise or crowds, if they feel defeated by the challenge of a conversation, or are struggling to remember an instruction. Similarly, being unable to identify or express feelings of pain or unwellness, can present as upset or irritability rather than a clear message of discomfort.
At a practical level, day-to-day tasks can become increasingly difficult, and handling more complicated matters, such as finances and managing employment, may feel impossible.
Which means that, as their condition evolves, their support needs will inevitably change. That’s why it’s so important to create a plan of what their future might look like, and understand the choices they may have to make, and the additional supports they might need.
How to plan for your future when living with dementia
‘How do I prepare myself for dementia and what follows?’
It’s a hard question with no easy answers. Perhaps the best way to begin is by asking: What are the most important matters/issues for me?’
Generally speaking, there are a few key areas to consider:
- Finance: Existing insurance policies
- Legal matters (the person’s Will and an ‘enduring power of attorney’ in case they need assistance to manage financial and medical decisions)
- Day-to-day ‘big’ tasks that they might need support with (such as driving), for which you can find independent support workers through Mable.
- An advance care directive – to give health professionals direction about the treatment they do, and do not, want.
To know more, visit the Dementia Australia website for some great resources.
Essentially, they should be able to clearly communicate everything they do (and do not) want to happen to them, their home and assets if they are unable to continue to make decisions.
What is advance care planning?
Advance care planning means thinking about how the person would like to live and be cared for as their condition progresses, quality of life outcomes they consider acceptable, and their end-of-life preferences. The planning process can include:
- How and where the person might wish to live
- Circumstances in which they might wish to limit treatment or avoid resuscitation
- Interventions they wish to avoid, such as blood transfusions, PEG (percutaneous endoscopic gastrostomy) feeding or surgery
- The values they want decision-makers to uphold when planning care on the person’s behalf, for example organ donation or religious beliefs.
These are highly personal decisions, so taking the next step of documenting them formally in an Advanced Care Directive can make managing future care much more straightforward for the family, as well as healthcare providers. As part of that process, the person can identify a substitute decision-maker to ensure your wishes are enacted.
Once a plan is developed, it can be shared with clinicians, care managers, caseworkers, and anyone else who provides support, to help ensure continuity and coordination of care. The advance care planning documents can even be uploaded to My Health Record, so the information is always available to treating doctors.
Whatever the plans for the future, it’s important to know that you never have to go it alone. Through Mable, you can find Independent Support Workers to assist you with whatever support you want, whenever you want it.
Why is advance care planning important in dementia?
While a person with dementia may be able to remain in control of most of their decision making for many years, it’s important for them to be proactive about considering and documenting their preferences and choices right up front so as to maintain their independence and quality of life.
These are tough but crucial conversations, and having them now will help avoid stressful situations later on.
Consider all the options available moving forward. That might include where – or with who – the person wants to live, and their capacity to support the person’s emerging needs.
As soon a formal dementia diagnosis has been received, it’s vital to get advance care planning underway. It’s not just important for the person with dementia, but also their family, carers and medical professionals, as they collectively navigate the challenges of cognitive decline.