Een boek met wetenschappelijke verhandelingen, persoonlijke verhalen en interviews over dementie. Goed om te lezen, maar af en toe wel moeilijk om mijn gedachten erbij te houden. ( )

Picked up idly in library...books on illness tend (in my view) to being a bit prescriptive, a bit smily and sentimental and "it's not that bad" and you cast them aside with an "in your dreams! You're just trying to cheer me up/ guilt trip me!"
This is utterly BRILLIANT and will be one of my year's top reads. It's not a self help manual, a lecture on how marvellous the dementia sufferer is, or any kind of guide on how you should be. It is, instead, more of a meditation...from what MAKES the self? through forgetfulness, those caring,; home (A home is very different to home...just as 'care'may not be care); and through hospitals, the End...and life after (this last chapter is entirely relevant to all bereaved, no matter what the cause of death)

" 'To learn to live', writes Derrida, 'is to learn to live with ghosts, in the upkeep of the conversation, the company or companionship...of ghosts.' The ghost is the other, living on in us - because it is only in us that the dead can survive. We have to be haunted. It is very hard to use the past tense."

Informed by her own father's illness, and many interviews with patients and carers alike, all at different stages, it was utterly unputdownable, heartbreaking (for all concerned). From the lonely (and much worse) life of the spouse/ child through to the terrible loss of understanding of the victim,...I shall be buying a copy to keep. ( )

Nicci Gerrard’s book about Alzheimer’s Disease is a combination of memoir and journalism. She tells about the last years of her father’s life, beautifully capturing him as a person both before and after Alzheimer’s struck. Gerrard manages to do what psychiatrist Arthur Kleinman tried (unsuccessfully) to accomplish in his recent book The Soul of Care: provide a sense of the personhood of a loved one stricken with a condition that seeks to erase the self. (In Kleinman’s case, it was his wife, Joan.)

Gerrard has also done considerable research, speaking with experts in the field (both academic and frontline clinicians), Alzheimer’s patients, and care givers. Her findings are rich and informative. She discusses the biological aspects of the disease, noting that while imaging and post-mortem studies of brain tissue often reveal obvious abnormalities in the appearance of cells and structures, these do not always correspond with the way patients may have presented clinically. A dissected brain may look very abnormal, yet in life the patient may have shown no signs of cognitive impairment. Conversely, brain slices from a patient who had been diagnosed with the disease, may show no visible markers of dementia. It does seem, however, that the characteristic amyloid plaques that many consider the hallmark of Alzheimer’s Disease may be the “ashes” after the “fire” of destruction, rather than the cause of the impairment.

Gerrard notes that while we generally think of dementia as a disease that impairs memory, there are actually multiple indicators—a “bewildering number of cognitive impairments” that, according to one book, may number as high as 256. There are also multiple forms of the disease itself. While Alzheimer’s, the most common form (accounting for one half of all dementia cases), typically presents with the loss of episodic memory (long-term memory of personal experience), there is a form of Alzheimer’s in which memory is preserved but visual processing is damaged: colours can extend beyond boundaries, objects can appear upside down or on a tilt, and the sufferer may have difficulty locating a door.

According to Gerrard, if we now seem to be in an Alzheimer’s epidemic, this is because the disease has come out of hiding. The statistics she cites give one pause. In 2015, an estimated 850,000 people in the UK were living with dementia, but it is believed that an equal number were undiagnosed. The number (in the UK) is expected to rise to over one million by 2021. According to the World Health Organization, an estimated 47 million worldwide have the disease; 5.5 million of them are in the US. Familiar with these numbers as Gerrard is, it is no wonder that she feels a sense of urgency about the need for society to address the many issues around humane and respectful care of the afflicted. Our awareness, she says, brings social, political, and moral responsibility.

Gerrard doesn’t just write about dementia; she also illuminates a number of other related subjects: aging, including a sense of the normal cognitive changes experienced as we get older; advance directives; assisted dying; care giving; old age “homes” which almost never feel like “home”—because they are not physical extensions of the self in the way a real home is; death; grief; and the ways in which we later take our departed loved ones into our own psyches. I found one of her remarks about aging particularly striking: “We identify ourselves as young, because in one sense we still are. The older, current self is a newcomer, still something of a stranger, who we have to live with but who we don’t feel entirely comfortable with and may sometimes be distressed by.”

Like consultant neurologist Jules Montague, author of Lost and Found: Why Losing Our Memories Doesn’t Mean Losing Ourselves, Gerrard is interested in the question of personal identity in individuals who lose the narrative of their lives, the sense of the continuity of themselves and their stories over time: “I used to say that we are made of our memories, but what happens when our memories are lost? Who are we then? If we are out of our mind, where have we gone? If we have lost the plot, what happens to the story we are in?”

Gerrard’s book echoes a point that Dr. Montague makes about how alterations in moral capacity in patients with neurological disease can affect the way those patients are perceived by family members. If they remain kind and cooperative, patients are likely to be viewed as “essentially themselves” by those close to them. When Gerrard asked neurologist Dr. Martin Rossor, the National Director for Dementia Research at the National Institute for Health Research, if he believed that a self is ever wholly lost to the disease, his judgement was similar to that of Jules Montague. Perhaps a self is lost, he said, “when all empathy goes”.

Another of the author’s interests is the way in which the arts may be used to aid those with dementia. Since she is a patron of the Creative Dementia Arts Network, it is not surprising that Gerrard should devote some of the pages of her book to visual-arts and music programs that seem to be helping patients stay connected to the external world. She also highlights the work of painter William Utermohlen, whose self-portraits, completed as his disease claimed him, can provide viewers with a window into the interior experience of the condition. Some of these paintings can be seen online. I am providing one link here that highlights the progression of his illness through his art. Utermohlen’s work shows us that not only is memory erased in Alzheimer’s, but a person’s spatial sense and perceptual capacities can be eroded as well: https://www.boredpanda.com/alzheimers-disease-self-portrait-paintings-william-ut...

The Last Ocean is a valuable work, which addresses some matters I haven’t seen discussed elsewhere. It is an honest and affecting piece. I do have a couple of relatively minor reservations about the book, however. At one point, Gerrard comments that animals “perish”, while humans “die”. I’m not sure I understand her distinction. If anything, our mortality links us with the other animals on earth. It seems to me Gerrard is insinuating that the death of nonhuman animals is a lesser thing than the death of humans—perhaps because animals lack the mental faculties, self awareness, consciousness, and sophisticated culture of humans. Having been with my own companion animals as their lives drew to a close, I believe that animals can certainly be aware that they are dying, and sometimes humans would be wise to take instruction from them. My second reservation about the book relates to some of Gerrard’s writing, especially towards the end: it is occasionally too self-consciously literary. Overly lyrical phrasing sometimes draws too much attention to itself and distracts from the content. ( )