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Book Review: What The Hell Happened To My Brain - Living Beyond Dementia by Kate Swaffer
Posted: Friday, February 10, 2017 7:50 AM
Joined: 7/24/2015
Posts: 3020

Book Review: What The Hell Happened To My Brain - Living Beyond Dementia by Kate Swaffer

After I was diagnosed with dementia and came the forum (and found very little understanding or support for how it is be diagnosed with a terminal diagnosis), I searched the internet for DASNI which, disappointingly had gone quiet, but I came upon Dementia Alliance International or DAI and met a bunch of amazing people who had been likewise diagnosed with dementia (and understood what it was like be diagnosed with a terminal condition), and in particular, I met an amazing woman named Kate Swaffer. 

Kate Swaffer hails from down under in Australia, where she is changing the face of dementia care there.  Kate took me (and indeed, many of us) under her wing and helped empower us find our own voices as dementia advocates.  It took a long time, it seemed, for Kate's book come out...but I was among the first order a copy. 

Kate Swaffer is a much loved friend of mine so I hope she will not mind my shameless plug of her and her book.


Some Quotes from her book:


Chapter 11  Early vs Delayed Diagnosis

"It can take many people years to get a diagnosis of dementia, in fact, many years sometimes for your doctor to take you seriously, and not put your symptoms down to things like depression, menopause, middle age, stress, anxiety, or perhaps even more likely possibilities such as post traumatic stress disorder.  Many other conditions also have memory loss or cognitive impairment, many only temporary, some with ongoing cognitive deficits or symptoms.  For younger people it can take at least three years to get a confirmed diagnosis, and some have even told me it took them that long just to get a referral to a specialist.  Unfortunately, the medical and nursing profession is not as well educated in dementia as they are in most other diseases, and this is an issue that universities and the health sector need to address."

Early Or Timely Diagnosis

"The purpose and value of early diagnosis of dementia is timely access to information, advice, and support, and access to a pathway of effective treatment and care from time of diagnosis to end-of-life care, and to enable interventions that may only work or be suitable in the earlier stages (Alzheimer's Disease International 2011).

Early diagnosis for people with the symptoms of dementia is essential as they may still have the ability to think logically, even though their powers of reasoning may have started to be impaired.  They will more easily beable to discuss the implications of the illness and how it will effect them and their families now and in the future, and it is the time when decisions regarding future care needs and financial and legal issues must be considered, while the person with dementia still has legal capacity. 

Giving the diagnosis at this early stage is not that different to the diagnosis of any other chronic and terminal illnesses, in terms of the discussion process.   Obviously it is important to remember the person with dementia may already be experiencing memory difficulty, and therefore time must be taken to give information in ways it can be retained, including repetition, printed information, and having other family members present.  Engaging the person with dementia is easier at an early stage because they are more likely to be less impaired in memory and cognition. 

People with dementia do have a moral and ethical right to be told of the diagnosis; doctors do not have the right to withhold it, even if a family member asks them to.  Ethically, they would not withhold a diagnosis of cancer or any other terminal illness, so it is absolutely unacceptable some believe that they have the right to withhold the diagnosis of dementia. 

Early diagnosis can empower the person with dementia to improve their own quality of life and may assist them to remain as independent for as long as possible.  It offers more opportunity for increased and continued social engagement and community participation, and for things like improving lifestyle, rehabilitation, and new learning- three things found to be extremely helpful in risk reduction of dementia.

It allows us to plan for our futures, including organizing financial and legal affairs and preparing for longer-term or more intensive care requirements.  Early diagnosis helps the person with dementia to be in a position to become active in advocacy and education of and about their condition within their own community.  Early diagnosis also allows the best outcomes for activities such as brain training, relearning, and retention learning (Bier et al. 2009; Heredia et al. 2009).  It also seems clear that the impact of developing a shared social identity among a group of people with early-stage dementia is important in the wellbeing and happiness of these patients (Bright et al. 200. 

Early diagnosis and therefore earlier intervention, especially of persons with younger onset dementia, may also allow the person to stay in paid employment for longer, reducing the cost impact to families, and ultimately governments.  It is also vital to delaying institutionalization, and to the shared welfare of the person with dementia and their loved ones."