Tag Archives: Isolation

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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Extra support during COVID-19

 

 

 

In these extraordinary times as we are all facing the collective global challenges of the COVID-19 pandemic, we are united in the sense that no matter where we are in the world, we are being asked to minimise physical contact with everyone, and to support each other.

Thankfully technology is on our side, and people with dementia have been using it for many years to maintain or develop new friendships.  DAI has existed entirely due to zoom, for all communications and meetings, so most of our members are used to it.

DAI is delighted to be able to share with you a number of additional peer to peer support groups which have been set up to support our members during COVID-19.

Although isolation and distancing is something many people with dementia experience once they share the news of their diagnosis, it has increased, and the basics of living have been made more difficult. Things such as shoppng, visiting family,  attending a local advocacy or support group, all have been impacted by the restrictions that have been imposed on all members of the community.

An updated list of the DAI peer to peer support groups

Note: If you are not already in a DAI support group and wish to join one, please contact us at [email protected]

Weekly peer to peer support groups:

  • Mondays 1:30 PM CSTNEW GROUP – co hosts Christine Thelker, Phyllis Fehr and Kate Swaffer, US/CA
  • Mondays 10:00 AM ACST – co-hosts Eileen Taylor & Kate Swaffer, AU/NZ/SG
  • Mondays 9:00 AM GMC – co-hosts James McKillop & Dennis Frost, UK/EU/SA/AU
  • Wednesdays 1:30 PM ACST – co-hosts Bobby Redman and Kate Swaffer (Back up hosts: Alister Robertson, Cheryl Day & Eileen Taylor), AU/NZ/SG
  • Thursdays 1:00 PM CDT – co-hosts John Sandblom & Wally Cox, USA/CA
  • Thursdays 3:00 PM CDT – co-hosts Sid Yidowitch, Dallas Dixon & Kate Swaffer, USA/CA/AU
  • Fridays 2pm ACST – NEW GROUP – co hosts Kate Swaffer and Eileen Taylor, AU/NZ/SG
  • Fridays 2:30 PM CDT – co-hosts Christine Thelker & Diane Blackwelder, USA/CA

Living Alone Social Support Groups

  • Sundays 5 PM GMC, co-hosts David Paulson & Julie Hayden, USA/CA/UK, weekly
  • Sundays 5 PM AEST, co hosts Bobby Redman & Jo Browne, AU/NZ,  NEW – now being hosted weekly

If you are not already in a DAI support group and wish to join, please contact us at [email protected]

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Tackling COVID-19: New Platforms and Resources

The World Health Organisation

The World Health Organisation provides daily updates on COVID-19, information on protectign yourself, data, technical advice and much more for us all to stay informed.

They also provide guidance on mental health and psychosocial support for health workers, managers of health facilities, people who are looking after children, older adults, people in isolation and members of the public more generally.

Please find below a list of materials already published.

Please send any feedback on these materials and suggestions for other materials that would be helpful to you during this outbreak to [email protected]

The Organisation for Economic Co-operation and Development (OECD)

As part of the OECD’s response to this crisis, they have launched a platform that provides timely and comprehensive information on policy responses in countries around the world, together with OECD advice, in some cases.

Alzheimer’s Disease International (ADI)

Alzheimer’s Disease International (ADI) is bringing together news, resources, stories, advice and support for anyone affected by dementia around the world, dedicated to resources relating to the COVID-19 pandemic. If you have information or resources you would like them to share, please contact them.

Dementia Australia (DA)

In a coronavirus (COVID-19) update from Dementia Australia, they reported that Dementia Australia will be modifying the way they approach their service delivery and activity . They have however produced a number of very useful resources to spport us all during COVID-19:

Tips for people living with dementia
Tips for carers, families and friends of people living with dementia
Tips for residential care providers
Tips for home care providers

LTC Responses to COVID-19: International Long Term Care Policy Network

Resources to support community and institutional Long-Term Care responses to COVID-19. This website has been assembled by a hopefully growing team of volunteers working on Long-Term Care research, to provide a space to bring together all those really useful resources we were spotting on Twitter. Please join if you can. Adelina Comas-Herrera (@adelinacohe).

Please feel free to contact us if you have other information or sites for us to consider sharing.