Dementia care specialist Theresa Bates explains the steps for a patient diagnosed with dementia once they leave their doctor’s rooms.
The most important advice we can give a family embarking on the dementia journey is to be proactive not reactive, yet this is hard when they do not know what to expect or how to go forward.
Dementia care advice is available, yet many people leave their GP, geriatrician or neurologist appointment and believe there is no one that can support them and nothing they can really do from here.
Many are told to wait six to nine months for an appointment at a memory clinic. At these appointments they undergo another memory test and someone records what new symptoms are occurring and out the door they go, again.
This is equivalent to someone being given a diagnosis of terminal cancer with no idea what to do or where to turn to – dementia is also a terminal illness.
It is imperative to obtain knowledge about the illness, not the myths or opinions of bystanders.
Most families do not understand the difference between the terms Alzheimer’s and dementia. These terms seem to be used interchangeably by many professional and non-professional people, without realising the confusion that causes. When people understand what they are dealing with, it makes it easier to understand the possible trajectories of the illness.
Our four main types of dementia – Alzheimer’s disease, vascular dementia, Lewy body dementia and frontotemporal dementia – all present with different signs and symptoms and the progression also differs. If we are able to develop extensive care plans based around their specific diagnosis, it gives families the ability to be ready for possible behaviours or situations that may occur and what they can implement at this time.
Knowing what to expect helps to support decision-making early in the illness. Feeling comfortable they have all the official paperwork completed and lodged with the appropriate government agencies and understanding the support that can be received – both financial and in-home – brings relief and another checkbox that can be ticked off.
One area that causes a great deal of stress is younger onset dementia. Anyone diagnosed aged under 65 is in this category. The majority of people who have younger onset dementia comment on how it took years to get a diagnosis. Most of the time their symptoms were put down to stress, depression or other mental health disorders.
My youngest client currently is aged 48 and has had to wait until she can no longer live her daily life without a carer to finally be diagnosed. Other families tell of their experiences of not being able to convince doctors to request tests or refuse to give them a referral to a neurologist.
Would it not be better to rule out an illness than leave someone confused and lost? Many of these clients are unable to qualify for NDIS support due to being diagnosed too late when they were clearly under 65 at the onset of their illness.
Dementia can be confusing, confronting and still carries a certain stigma. It requires a multi-disciplinary approach from several professionals. Everyone involved with a person living with dementia and their families need to understand that this approach is for the benefit of their patient.
This needs to be from knowledgeable and experienced specialists through to the carers providing day to day care and everyone in between.
We need to do better and create a team approach that will give families a chance to succeed and not be overwhelmed with the carer role.
The numbers are staggering and only growing so let’s create a way to make the journey of dementia easier.
ED: Theresa Bates has a degree in dementia care and has worked with families in this area for four years. She also has 10 years’ first-hand experience caring for her mother with dementia.