Tag Archives: segregation

How people with disabilities due to dementia are marginalised

We continue to share written or video stories, poems, and other stories of interst from our members, as part of o ur World Alzheimer’s Month – Dementia wareness Month activities. Today we are sharing a presentation made by DAI Board member Phyllis Fehr.

On June 8, Phyllis provided a statement for the United Nations Online Regional Consultations with people with disabilities and their representative organizations in the Caribbean and North America;

“From isolation, invisibility and segregation into inclusion of people with disabilities in the community. Identifying and overcoming barriers to the successful process of deinstitutionalization”

How people with disabilities isolated, marginalized, excluded, segregated or institutionalized in the Caribbean and in North America regions? How can these practices end?

Phyllis Fehr

As a woman living with Young Onset Dementia, I sat back with dread, fear and utter disbelief as I watched what was happening in the long-term care sector for people living with dementia.

These people were being further isolated and segregated. They were subject to disgraceful living conditions, in some instances. They were placed in their rooms with no interaction from others. Some received no assistance with activities of daily living or feeding. They were unable to have visitors or even accept video calls in the early stages of the COVID pandemic.

I watched as the early numbers grew and grew and, I watched as these people were not given a choice as to what was happening to them with regards to their care. I also watched in amazement at how decisions were being made about, and for, people living with dementia without any input from them or a family carer. This in itself scares me and makes me wonder what it’s going to be like when I need to go into care, after I  can no longer care for myself.

Some people with Alzheimer’s  disease [or other dementias] are unable to understand what’s happening or even communicate their needs or understandings. That is why I would like to see the care settings turned into small 4 to 6 bed residences, with a home-like environment, within a residential community – where the paid care staff are able to learn, have human rights training and have a better understanding of the person they’re caring for. That way they are seen as an individual not as a patient.

Moving from a medical model to a more social model of care, clients will get more personalized care in a more understanding setting. This type of setting will help to alleviate the spread of infections and diseases throughout, not like in large institutions.  It will help to minimize the devastation that happens to people in institutional settings. In these smaller group settings, people living with dementia will have more contact with care givers and will not feel the isolation they experienced in the larger setting, during the COVID epidemic.

The staff-to-patient ratio will be much better rather than eight-patients to one nurse. it could be three patients to a Personal Support Worker. This will greatly improve the actual hands-on-care, the understanding, and the standard of care that these patients will receive. We could have multiple homes in one neighbourhood, allowing for visits and get-togethers with other homes.

We know that people living with dementia do much better when they are kept engaged and are able to interact with others. In small group home settings, this is more achievable than in the larger settings. I firmly believe that this is the way to go in the future, so that we are able to remain in our community and have a sense of belonging.

We may have a cognitive impairment, but we are still able to understand and engage until late in the disease process. We all have human rights let’s abide by them.

Thank you for your time.

Phyllis Fehr, 2021

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Human Rights and the Confinement of People Living with Dementia in Care Homes

Todays blog is an important Human Rights Law Journal article, Human Rights and the Confinement of People Living with Dementia in Care Homes published on 18 June 2020.

By Linda Steele, Ray Carr, Kate Swaffer, Lyn Phillipson, and Richard Fleming.

Abstract: This paper responds to growing concerns in human rights practice and scholarship about the confinement of people living with dementia in care homes. Moving beyond the existing focus in human rights scholarship on the role of restrictive practices in confinement, the paper broadens and nuances our understanding of confinement by exploring the daily facilitators of confinement in the lives of people with dementia. The paper draws on data from focus groups and interviews with people living with dementia, care partners, aged care workers, and lawyers and advocates about Australian care homes. It argues that microlevel interrelated and compounding factors contribute to human rights abuses of people living with dementia related to limits on freedom of movement and community access of people living with dementia, at times irrespective of the use of restrictive practices. These factors include immobilization and neglect of residents, limited and segregated recreational activities, concerns about duty of care and liability, apprehension of community exclusion, and pathologization and subversion of resistance. It is necessary to challenge the organizational, cultural, economic, and social dynamics that shape day-to-day, microlevel, routine, and compounding factors that remove the agency of people living with dementia and in turn facilitate entrenched and systematic human rights breaches in care homes.

You can download the full article here…

This article is one of three, as part of a research project many members of DAI were involved in as participants of the research, and at the Summit. The project ‘Safe and Just Futures of People Living with Dementia in Residential Aged Care’ aimed to explore:

  • current barriers to liberty and community access for people living with dementia in RACFs; and
  • the possibilities and challenges of utilising a human rights framework to transform the living and support arrangements of people living with dementia in RACFs.

The first published article, Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes, was published last year, and the anthology and project report was published earlier this year, also available to download here.

#HumanRights4All