The effort to bring forth the strengths and personhood of people experiencing dementia and cognitive impairment has brought with it a number of programs geared towards the early stages when a PWD can more easily be engaged and has higher levels of verbal communication. Preferences can be articulated, activities can be tailored, gifts (personal and metaphorical) can be bestowed, research can be conducted. No longer are persons-with-dementia living in the shadows. However, despite the excellent and laudatory efforts at inclusion, family members are still left with extreme feelings of loss and oftentimes anger and frustration. Research and programs tell us to be inclusive and reciprocal but as support group facilitators will tell you, this is not always easy.
In an effort to give voice to the people living with dementia, this article emphasized that indeed, many people experiencing cognitive decline do have insight and can and do make adjustments in their expectations, of both themselves and their partners. But the highlight for me was the use of language. Not only how we use language to communicate to a person with memory impairment, but also the language we use to describe the difficult circumstances a family encounters as they live with this new diagnosis and understanding.
So what do we now call this newly re-negotiated relationship? Culturally we’ve moved from caretaking to caregiving. More recently the word partnering has come into use. Instead of describing a uni-directional relationship, partnering infers reciprocity – the relationship is give and take on both sides. Expectations in long-term reciprocal relationships frequently imply equality in expectations. But it was suggested that through life’s developmental milestones and transitions, expectations continually change. In fact, there is never really absolute equality of chores, responsibilities or demands in a relationship– it is and must be fluid. The challenge is to apply this fluidity to this moment. The use of language and labels becomes important in how we frame these relationships. The article used words such as stewarding, agency and interdependence representing for me the skill that partners need in order to re-negotiate relationships and to re-frame one’s understanding of oneself and of one’s partner.
And culturally, will we ever be able to get to “This is a normal person who has dementia with a chronic cognitive impairment?” expressing the idea that dementia is a chronic disease for which accommodations are made. For instance in diabetes we allow for accommodations in diet; in cancer we allow for accommodations for chemotherapy; and in a diagnosis of congestive heart failure we allow for fatigue and need for rest for the individual. If we accepted dementia as a new normal, we would allow for difficulty in concentrating for long periods of time and learning how to communicate differently and return to the essence of a person, as Elderwise would tell us is at the heart of dementia care. We do know that for the person-with-dementia living in the moment – be it activities or memories or behaviors – is elemental. It becomes our job to live in the moment with that person, which is not to say that we shouldn’t recognize and affirm the sense of loss that family might be feeling.
I am left, most profoundly with one part of our discussion: that we all have a fluidity of identity. Who is the “I” is a life-long art. Can the person with chronic cognitive impairment construct a new identity for him or herself? How realistic is it for people to re-construct or co-construct the present and new reality as suggested in the article. Though the greater responsibility often lies with the person who doesn’t have memory impairment to shift and change, can we also learn to appreciate what is there and what new strengths may be present. Perhaps there are new emotional strengths or creativity present. Perhaps both members of the relationship can find new pathways and comfort in communicating differently. If new aspects of the “I” are revealed, the question of the importance of personal history becomes doubtful. If we rely too much on personal history, “Who was” that person, instead of “Who is” this person, we may constrain someone from creative expression or exploring opportunities. Rather history should inform and offer background, but not limit our perception or expectations of the individual.
The Round Table Discussion Group meets monthly for an interdisciplinary conversation with experienced professionals in the field of aging. Each conversation uses one or two journal articles as reference points. The article read for this discussion was:
Reciprocal Relations: The Recognition and Co-Construction of Caring with Alzheimer’s Disease, Janice E. Graham, Raewyn Bassett, Journal of Aging Studies 20 (2006) 335-349.