Death

Dementia care toward the end of life

By Jane Teasdale

Some thoughts on the social, emotional and creative needs of those living with dementia…We are persons of meaning, being and community. And as we age and move toward the end of life, the well-being of our personhood should concern us. Each of us—including those who have become fragmented by the impact of dementia and are less able to respond or retain prior identities, in part or in whole—has the right to expect care that is person-centred

I n the title of her 1998 book, Christine Boden asked Who Will I Be When I Die? In order to deliver care, we should put ourselves in the place of the person and ask: How will others see me when I die? How will my world be touched? How will I touch my world?

At risk of unfavourable positioning

Persons living with dementia are at risk of social disadvantage1 and being treated in ways that diminish being. In this respect, the most important function of the care frame is to help vitalize and support identity, self and being. This requires particular sensitivity to both the dimensions of the mind (e.g., social and emotional needs, creativity, meaning, spirituality) and of the “place” that a person inhabits (past and present, and including physical, social, emotional, psychological and cultural dimensions). While the ability to fully relate to these dimensions can fracture over time, important residual elements of needs and relationships remain even toward the end of the life.

Value from personal relationships

Academic research supports the necessity of addressing the social and emotional needs of those living with dementia. A number of studies have found people living with dementia do not associate themselves with their dementia. In a study by Bhatra and colleagues, both those living with dementia and those without the condition attributed much of the value in their lives to their interpersonal relationships. The researchers concluded: “The ‘loss of self’ frequently attributed to people with dementia is not supported by the verbalizations of those who participated in this study.”4 Another study has reported that meaningful activity is important in fostering connections, a sense of belonging, autonomy and personal identity.

Able to adjust

Tanner has suggested that older people with dementia are able “to adjust their expectations, employ coping strategies and  find new ways of experiencing hope.” Tanner pointed out that “respondents were involved in the same process of identity preservation that we all are” and that “older people with dementia in a care home ‘craved the opportunity to be socially engaged’ and all had their own diverse and unique means of self expression, with the potential to develop meaningful communications with others.”

Ward and colleagues have poignantly remarked that, “Far from being a condition that erodes a person’s capacity to communicate, we have found that dementia generates an array of creative responses from those affected by it, in an effort to connect meaningfully with others.”

The evidence also supports the presence of recognition, implicit memory for events8 and sensory and perceptual awareness9 right up to the end of life, with some aspects of complex awareness even being retained into the severe stages of dementia.

According to the Social Care Institute for Excellence, those in the advanced stages of dementia who are inactive and have lost the ability to speak can still experience emotions such as loneliness, boredom and frustration. People with dementia will often respond positively to close one-to-one attention using their eyes or hands (touch) to make a connection, and retain the desire to communicate with others.

The evidence, in my opinion, bears out the need for those living with dementia to be able to fully express themselves and to interact as far as possible with others and “place.”

Our experience

At Mosaic Home Care and Community Resource Centres, we have developed a multilayered model of non-clinical psychosocial interaction. At its widest bounds, the framework is used to generate meaningful conversations, provide an avenue for reminiscing and offer a creative space to develop interests and personal growth, with feedback loops to and activities within the wider community. The nature of the engagement and the interface change with a person’s ability to communicate via speech and move independently, but the essence of the communication remains the same for all.

Will we continue to fail?

Palliative care’s focus on the social, psychological and spiritual, and on the person, family and community, implies a necessary continuity between holistic care during life and care at the end of life. Yet we know that those living with dementia at the end of life are less likely to receive palliative care and more likely to experience aggressive medical interventions, and are often moved to a “strange” environment with unfamiliar, less dementia-savvy staff.

Despite the importance of interactions for those living with dementia, it seems that Canada remains ill-equipped to deliver a holistic model of wider social support, especially at the end of life. Part of the solution may involve developing wider community responsibility and supporting structures in the vein of the Compassionate Cities model espoused by Professor Allan Kellehear and the use of a framework that requires a non-clinical lens of communication to enable interactions.

Jane Teasdale is the principal director of business development at Mosaic Home Care Services & Community Resource Centres (mosaichomecare.com). For more information about Mosaic’s memory cafés, call 905-597-7000.

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