To me, speaking with people diagnosed has always been about respecting them as people and viewing them as being my teachers. It has been my job to play detective when necessary to figure out what they are trying to say; because I believe that they are always trying to communicate something. Indeed, it is exactly what we do when we encounter someone who does not speak our language but is trying to do so. We work with them to construct meaning. Active listening is the key and I believe that doing so communicates honest interest and respect and that people flourish when they feel respected and heard.
STEVEN SABAT from The Story of Dementia by John, to be published August, 2017
Poetry allows me to find true purpose in my experience of living with dementia, the good, the bad, and the downright ugly days.
Poetry is, beyond any dreams, the one daily non-pharmacological intervention for dementia that brings the greatest meaning.
KATE SWAFFER from 'Sharing the Pleasure of Reading Aloud' Australian Journal of Dementia Care Issue 4, Vol 4
If the symptoms of dementia were treated as disabilities, the negative impact on the person, their family and society would be far less. We would be given assistance to remain employed or to live beyond dementia, which in turn would increase our social inclusion and social equality. This would decrease the isolation, stigma and discrimination and would also reduce the negative economic impact on the person, their family and society. KATE SWAFFER What the Hell Happened to my Brain? JKP 2016
To make proper use of the opportunities opened up by the acknowledgement of distress is to take one of the few paths open to us to develop and assert our subjectivity.
David Smail, Clinical Psychologist Illusion and reality: The meaning of anxiety. Reprinted in Why Therapy Doesn't Work (2001: 210) Robinson: London
We receive and we lose, and we must try to achieve gratitude; and with that gratitude to embrace with whole hearts whatever of life that remains after the losses. ANDRE DUBUS, from Broken Vessels
Somehow, her Alzheimer’s made her more open, more truthful. There’s a kind of odd poetry in dementia that picks out jagged, glittering pieces of truth, and makes you have to reassemble them. “You have an open heart” she’d say to me. “You can sense things. I can sense things too.” It was the closest we’d ever been, and probably the closest we would ever be. It was as deeply satisfying as it gets… JACKIE KAY, poet (writing about her mother) from Red Dust Road (Picador) p. 86
While pain is a given, suffering is optional. My teachers have been husbands and wives, siblings and children, friends and grandchildren who have avoided suffering by embracing their loved ones as they are; by living in the present moment of Alzheimer’s with its humour, pathos, fun and joy as well as pain. JOHN ZEISEL (from ‘Hearing the Cry ‘I’m Still Here’ in the midst of grief and loss’ Journal of Dementia Care (2010) Vol 18 No 2 p. 20
The ego leaves quite early. I become what I have always been. It allows me to become quite naughty. I am unstoppable and unbiddable. But they park people like me in a warehouse with other people like me, and it diminishes me. I believe more people die of depression and despair than of dementia. LARRY GARDINER (who has a diagnosis of dementia) From a speech at a conference in September 2012
The next time you communicate with someone who is not at his or her cognitive best, remind yourself of this: "This interaction is not about me. This interaction is about someone who is seeking connection on terms that may not advance the interests or needs of my ego. I am going to go where your needs are taking you. I am going to be with you in that place, wherever and however it is. I am going to let my ego disappear now. I am going to love you in your image instead of trying to re-create you in mine." MICHAEL VERDE, President, Memory Bridge Chicago, Illinois Quoted from Love, Loss and Laughter: Seeing Alzheimer's Differently by Cathy Greenblat 2012 Lyons Press: Guildford, Connecticut
This is how we make sense of the world - through the stories we tell about it, to ourselves and others. People were surely telling stories long before they attempted strictly historical narratives that venture some kind of precise and literal mapping of what happened, and they are likely to go on doing so, in one form or another, for as long as life endures. ... This is what a story can suggest - how people act, not like cogs moved by the machinery of circumstance, but as autonomous beings, on the basis of what they perceive and understand, and of what they invent for themselves. MICHAEL FRAYN The Guardian Review 09/06/12 p.6
Each moment of now is what we could call a branch point. We do not know what will happennext. The present moment is pregnant with possibility and potential. If we are present in this moment, that naturally affects the quality of the next moment. If we wish to take care of the future, the only way we can do that is to recognize each moment as a branch point and to realize that how we are in relationship to it makes all the difference in how the world, and our one wild and precious life, in Mary Oliver's delicious phrase, will unfold. Jon Kabat-Zinn in Arriving at your own Door: 108 Lessons in Mindfulness (2005)
I recently had the privilege of visiting one of the dementia cafes in Leeds where, seated round a very large table, individuals with dementia, their carers and volunteers were all engrossed in producing truly amazing coloured panels. The activity … involved a making process, it gave opportunity for achievement and celebration, it was emotionally expressive, all sense of time was suspended, and it had a real sense of ‘flow’, defined as an experience of integration and cohesion, as against the disintegration that tends to mark dementia. All of these contribute to a sense of wellbeing. ALBERT JEWELL from ‘Dementia Newsletter’ No 39 May 2012 Christian Council on Ageing
[I observed] the work of two 'relational clowns' (much more friendly, playful, gentle and empathic than the typical circus clown) who seem to be able to evoke remarkable responses from people who are depressed or severely withdrawn. The presence of the clowns itself excites attention and their gestures and movements evoke an immediate response, often without the use of words. TOM KITWOOD (from a review of a conference in the 'Journal of Dementia Care' 1998 Vol 6 No 4)
Spending time with people who have dementia has made me a more patient parent, friend, daughter, sister, wife. It has made me notice and be endlessly thankful for things like the horizon of Lake Michigan, gray storm clouds, three or four well-chosen notes on a cello, and breathing. ANNE DAVIS BASTING in Forget Memory (p.160)
Someday those who care for a person with Alzheimer’s may be faced with what appears to be an insoluble problem. Caregivers may try anything they have been taught but nothing works. So, they touch the arm of the person with Alzheimer’s and speak softly and gently. Because of the patient’s apparent distress, the caregiver may hug the person with Alzheimer’s or give a kiss and tell the person that he or she is loved. One day, if the caregiver is lucky, a revelation occurs. That person learns that the last thing we ever lose is love. Our memories may be gone. Intellect and logic may have diminished. We may have forgotten your name and where we are, or what we are doing. But we remember love. TIM BRENNAN From ‘Perspectives: A Newsletter for Individuals with Alzheimer’s’ ed. Lisa Snyder 4 (2) 7 (1999) Available by email – contact: [email protected]
My mother is on some subterranean voyage, travelling towards death, making I know not what astonishing discoveries which she appears to have neither need nor desire to communicate. It is as if she were on a spaceship beyond the reach of telecommunications: one can only guess what kind of provisions she might require and try to provide them for her. SIMON CALLOW in My Life in Pieces
People living with Alzheimers tend more and more to experience a point rather than a line of time. Someone might talk about a long-dead relative as if he were just about to arrive for a visit. Or a daughter of sixty is seen as a sister of thirty. It is as if past experience and the future have drawn together with the present as one; much like how our unconscious minds combine several dimensions of time and place when we dream. The present moment represents all moments. JOHN ZEISEL from I'm Still Here
Actors (and artists) have a particular talent for communicating with people with dementia. I think this stems from a quality of attention, concentration, perhaps ability to be still, in the moment, filtering out all other distractions and claims on attention. This is necessary for acting and all artistic endeavour, and may help to explain why the arts are so effective in promoting communication with people with dementia. The challenge is to enable care staff to achieve this level of connection too, and help them to see the potential of the people they look after. SUE BENSON Ladder to the Moon: interactive theatre in care settings Journal of Dementia Care 17(4) 20-23
It is important not to assume that people with Alzheimers Disease have lost understanding or knowledge. It is too easy to think that they do not know simply because they do not communicate. We need to take on the challenge of finding ways to communicate successfully, to try different routes to find common ground. TREVOR HARLEY, University of Dundee
We forget that life can only be defined in the present tense; it is, and it is now ... and that nowness becomes so vivid to me that I am almost serene. Below my window the blossom is out in full. And it is the whitest, frothiest, blossomest blossom that could ever be. And I can see it; and things are both more trivial than they ever were and more important than they ever were, and the difference between the trivial and the important does not seem to matter. But the nowness of everything is absolutely wondrous. DENNIS POTTER, playwright 1994 (shortly before his death)
People with dementia very often seem to see more than we do, to see through things, round things, past things. Their senses appear at times to be differently deployed so that they hear smells, see voices, taste pictures. They use metaphor as we might use observation, their linguistic range, which to us without dementia may appear very strangely configured, is also fluid, generously, even lavishly, overlaid with imagery, freed from grammatical or chronological rules. It is already poetic in essence. KAREN HAYES from The Landscape of Dementia (unpublished)
The intuitive mind is a sacred gift, and the rational mind its faithful servant. We have created a society that honours the servant and has forgotten the gift. ALBERT EINSTEIN
I have seen deeply demented patients weep or shiver as they listen to music they have never heard before, and I think they can experience the entire range of feelings the rest of us can, and that dementia, at least at these times, is no bar to emotional depth. Once one has seen such responses, one knows that there is still a self to be called upon, even if music, and only music, can do the calling. OLIVER SACKS (2007) Musicophilia: Tales of Music and the Brain New York: Knopf (p.346)
His function was to arouse confidence and to be receptive, to listen patiently and lovingly, helping the imperfectly formed confession to take shape, inviting all that was dammed up or encrusted within each soul to flow and pour out. When it did, he received it and wrapped it in silence. HERMAN HESSE (1973) The Glass Bead Game Penguin p. 457
Forgetting has become part of who Daddy is, so I decide to try to honor his forgetfulness. I try to love it. It defines his being these days, and sometimes I feel that to see him I have to look through it, a shuttered window. Underneath the forgetting lie a few remembered things, shoelaces, the way to hold a razor to shave, song-lyrics he recalls, like cockles and mussels- but you have to catch them at the right moment of the day, when they shine through the slats. Daddy is Daddy now because he forgets. ELIZABETH COHEN (2003) The House on Beartown Road: A Memoir of Learning and Forgetting London: Vermillion (p.196-7)
A man does not consist of memory alone. He has feeling, will, sensibilities, moral being --- matters of which neuropsychology cannot speak. And it is here, beyond the realm of an impersonal psychology, that you may find ways to touch him, and change him. A.R. LURIA From a personal letter to Oliver Sacks quoted in his 1985 book The Man Who Mistook His Wife For a Hat London: Picador (p.32)
Humour … has considerable merit in providing a means of access to otherwise inaccessible territory. As well, its power to transform the moment is too vital to be ignored. RUTH DEAN(2003) Death, Humor and Spirituality: Strange Bedfellows? In GR Cox et al Making Sense of Death: Spiritual, Pastoral and Personal Aspects of Death, Dying and Bereavement New York: Baywood Publishing Co Inc (p.80)
A new form of hospice for patients with advanced [dementia] would revolve around the concept of 'being with' rather than 'doing to' patients ..., even if they have some years to live. ... Efforts to enhance emotional, relational, and esthetic well-being would, under such a plan, be enhanced in ways that involve family members, providing them with a sense of meaning and purpose. Through music, movement therapy, relaxation, and touch, such efforts support patients' remaining capacities. Connections with nature through a beautiful and open environment fit under this rubric, as can spiritual support. STEPHEN G POST (2000) The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying (2ndedition) Baltimore: Johns Hopkins University. Quoted by J Hughes (2006) Beyond hypercognitivism: a philosophical basis for good quality palliative care in dementia Les Cahiers de la Fondation Mederic Alzheimer