Web 2.0 and non-pharmaceutical approaches to Alzheimer’s

Rita Bencivenga, Alessandra Tinti, Licia Nigro. StudioTAF, Genova, Italy

“We’d promised we’d never put her in a care home.”
“I was told I’d only be working as a caregiver during the day, but it’s not true. I can’t go on anymore. I need to sleep for a few nights otherwise I’ll go crazy.”
“If Sister tells me to walk Mrs. Rossi around again, I’m going to the Director. It’s not my job to do it.”
“It’s strange. Even though we don’t understand each other anymore, we laugh a lot. She was never a happy woman, but now everything’s different.”
“Even though I’m tired and worried, being with him gives me a sense of peace.”
“The new lady reminds me of my grandmother. I’d like to go and hug her but the Director says we must keep our distance from guests.”

Dealing with worries about a person living with some form of dementia, including Alzheimer’s, means handling a series of situations connected to all areas of life: not just emotions, relationships or health.

At Studio Taf we believe that all caregivers acquire a wealth of knowledge, but in many cases this wealth is not shared with other people. As a result, our experiences as caregivers lose some of their meaning and we miss out on creating a path towards empowerment; this may apply to many others facing, or preparing to face, a similar path.

The ELSA project aims to provide non-formal and informal learning pathways to supplement the skills of professional and family caregivers and all those caring for the frail elderly.
ELSA is innovative in that it uses technology to aid learning in the field of the frail elderly.  The idea is to use social networks to help formal and informal caregivers exchange information. We have collated the experiences of relatives as well as professionals and health workers based at nursing homes, in hospitals, day centres and at home.

The approach behind the project

Looking after elderly people involves more than just providing health care, and we cannot expect professional caregivers to take responsibility for every aspect.  A person who has age-related cognitive or motor disturbances is still part of a family, has friends and acquaintances, and remains part of a wider community in which they will have been active for many years.

When we’re looking for extensive care solutions for our loved-ones, it’s a mistake to hand everything over to medical experts alone. And it’s also a mistake to think that we’ve lost our role in our loved-ones’ lives. Whether we’re professional caregivers or relatives of a frail elderly person, we must be aware that we’re part of a larger group of people who each have a role. This is the only way to ensure that care retains the human characteristics which give it a meaning for all those involved.

The ELSA project was inspired by a person-centred approach. Based on the observations of Tom Kitwood, it emphasises the importance of treating people as individuals whose life stories, experiences, likes and dislikes help define them as individuals.

Tom Kitwood coined the term “malignant social psychology” in the 1990s to describe the “devaluing and stigmatising interactions within care that can undermine the deep psychological needs, or even the identity of people.”
Although generally recognised as unintentional, these interactions are very common. They are in fact a generally accepted aspect of the care culture, despite the deep damage they cause to the care process.
This is particularly evident when people have difficulty following verbal communications, as in the case of dementia. People living with dementia process messages in non-verbal ways, sensing the general negativity of their environment.

Kitwood tells us: “Episodes and events occur daily in care work that often run contrary to the approach advocated by professionals and recipients of services.” Unfortunately the typical lifestyle found in many nursing homes and care homes is still based on the approach used in hospitals or rehabilitation centres. Residents of care homes – and let’s not forget that these are people’s homes, not places where they spend a few days or weeks – often have no control over basic rights and pleasures: when they get up in the morning, what they eat, how they spend their day and when they go to bed.

When older people lose the ability to take care of themselves, caregivers often focus on physical comfort, safety, hygiene and their immediate environment. These are important issues, but certainly not the only ones. Above all, this model is far from the person-centred approach which sees each person as an individual.

If people around a table in a nursing home often all seem the same, it is not because of the passage of time or, in many cases, the effects of disease. Even in environments with the best possible intentions, there is a slow but relentless “flattening” effect which homogenises people:

• they get up at the same time every day;

• they eat the same things, at the same time and all in the same environment;

• they go to the bathroom at specific times;

• they wear their hair short because it’s easier to wash it and keep it tidy;

• they wear trousers rather than skirts to make it easier for caregivers to change them;

• they always watch the same TV programmes...

None of these situations involves outright aggression or hostility, but we need to ask if people’s individuality is really being respected. Caregivers tend to save time by doing everything for the elderly, rather than allowing them to go it alone as much as possible. This is a dated culture of care which reduces aging and dementia to a biomedical phenomenon. It is based on “doing” and “tasks” which devalue a person’s individuality and ability to act. Sometimes it relies on controlling techniques (including chemical and physical restraints) and uses unnecessary medication, based on a warehouse-like model where people are seen as objects requiring storage.
By contrast, person-centred care focuses on the independence, welfare and empowerment of individuals and families and allows people to feel supported, valued and socially
competent. But to switch to this model, we must all be convinced that people remain individuals even when their mental capacities decline. We must recognise the centrality of relationships, the uniqueness of the person, and that our “personhood” exists even when we can no longer communicate verbally.

Conclusions
In the ELSA project we collected experiences and observations from people with personal or professional experience of caring for the frail elderly. We asked them which strategies, ideas and tips helped them in their daily practice of care.

Our aim is to provide a wealth of resources for all, including those who are isolated in this experience because they live in small towns or remote places, or are unable to participate in training and refresher courses.

We believe that Web 2.0 can help empower people who want to play a leading role in their story, and who want to compare their everyday experiences with others facing the same challenges.