At 28, Tammy is now the primary carer for her  mother, who was always an active woman until a rare type of dementia took hold in her early 50's

At 52 Tammy's mother had a job she loved as a librarian, loved going out and having a good time, belonged to a book club, played piano at family gatherings, enjoyed her garden and was a member of the local sailing club.

“Of course I fully expected mum would eventually age more and start to deteriorate,” Tammy said “but I was expecting that to happen in another 20 or 30 years, so I was shocked by how rapidly it all happened.

“It seemed like one day she was living independently and in good health and then all of a sudden she had speech difficulties and before I knew what had hit me, the doctor was telling me my mother had Primary Progressive Aphasia (PPA).

“I looked it up on the internet and found out it is a form of dementia that can occur in people as young as in their late 40s, but usually in people under the age of 65. It is caused by a disease process in the brain that results in degeneration of nerve cells in the parts of the brain that control our ability to use language, and it involves a decline in one or more language functions.”

‘Aphasia’ is a general term used to refer to deficits in language functions including speaking, understanding what others are saying, repeating things we have heard, naming common objects, reading and writing.

PPA initially may be experienced as difficulty thinking of common words while speaking or writing. It progressively worsens to the point where verbal communication by any means is very difficult. The ability to understand what others are saying or what is being read also declines. In the early stages, memory, reasoning and visual perception are not affected by the disease and so individuals with PPA are often able to function normally in many routine daily living activities, despite the aphasia. However, as the illness progresses, other mental abilities may also decline.

In Tammy’s mother’s case, the language deficits worsened more quickly than usual. And now, five years since diagnosis, the dysfunction seems to be spreading to other areas.

“Initially, mum had trouble figuring out the right word to use. She would say something like: ‘I need to go to that place where we read books every week’ instead of ‘I need to go to the book club meeting’. Or she might say, ‘Well, I’m off to the Council now’ when she actually meant that she was off to the library.

“Another thing that frequently happened was that she would mispronounce words which she knew very well. She might say: ‘I went for a wonder in the park today’ when I knew she meant wander.

“At the same time even the simplest writing tasks confused her – even addressing an envelope became tricky and she would do it back-to-front or just stop and stare at it, not knowing how to proceed.

“You can imagine the chaos that was created in her workplace because language and verbal skills were very important to the job. She wasn’t able to catalogue books any more or even find things on the shelves. She had trouble communicating with people who came into the library and kept asking them to repeat themselves.

“By the time she left her job, her use of language had decreased a lot, and she was very difficult to understand. Mum wasn’t financially or emotionally ready to leave her job and it was a very distressing time for her.

“I moved her in with me, in my two-bedroom apartment, as my only sister lives in the United States. I work as a nurse in a busy local hospital. I can get some help during the day because I pay a wonderful neighbour to call over for a couple of hours every day and keep mum company. They both love gardening, which is a very non-verbal activity they can enjoy together in our little courtyard garden. They have made the most amazing little veggie garden you could imagine.

“Over time, it has been interesting to see how some of mum’s other abilities, like sewing, have not been at all affected. She was always a brilliant seamstress and never needed patterns. And now, she still sews most days on her old machine, making beautiful garments for us both.

“Funnily enough, she also occasionally goes out sailing on a friend’s boat and seems not to have too much trouble with that, either, so long as no one talks to her.

“I am only 28 so for me, becoming a primary caregiver, has been a life-jolting experience, and one that I never expected to happen so early in my life.

“I love mum a lot and want to care for her but her disease has affected the way in which we relate to each other. We used to talk all the time – about everything. When I was growing up I could always go to mum to talk about anything and everything – so that has changed.

“At the moment, she doesn’t speak at all. We communicate via gestures and drawings mostly. My main challenge is in being patient with her.

“At first I was really sad this had happened to her. Then I felt really angry. My dad and mum are divorced and he lives in the United States, so there has been no one else to share this journey with, so that has been a big challenge. I think that both mum and I have suffered a bit from depression at times.

“I am not sure what the future will bring and I have reservations about starting a romantic relationship with someone while I am mum’s primary carer as PPA is a degenerative and progressive condition and I am not sure how it will progress in mum’s case.

“Eventually, almost all patients become mute and unable to understand spoken or written language, even if their behaviour seems otherwise normal.

“Half of all people with PPA will eventually develop cognitive or behavioural problems. For others, the aphasia may remain the main problem for as long as 15 years. In general, the longer the duration of aphasia by itself, the less likely that other signs of dementia will develop.”