A recent news story told about a village in Holland called Hogeway. At first glance Hogeway seems like any normal small community. It has houses, a grocery store, a restaurant, a theatre, a barber shop, as so forth.
People happily stroll through the shops, squares, courtyards, and local park. Hogeway is a clean, orderly community with 152 residents. They all have one thing in common: Severe dementia.
Hogeway is actually a nursing home but its residents don’t know that. Hogeway’s “normality” is not real; it is contrived, but again the residents are unaware of that. They are happy in their fantasy world. The goal is to make living as normal and familiar as possible within the scope of each resident’s disease. It’s an interesting concept in health care.
Residents live in one of 23 houses with about six others, according to lifestyle. Each house has one or more health care workers to assist with life. Residents are free to walk where they wish in the town because they can’t get lost.
Special two-seater bikes allow residents and workers, or family members, to ride throughout the village. The residents live protected lives and are happy.
Hogeway employee Yvonne van Amerongen was quoted as saying, “We protect our residents from the unsafe world. They do not understand the world outside this because the outside world doesn’t understand them.”
Hogeway is partially funded through taxes and residents contribute according to their income.
The Hogeway approach and philosophy to dementia care is so successful that it has generated interest in other countries including Canada. A Hogeway-style village is located in Penetanguishene, Ont. Families and residents are pleased with the facility.
But as with any good idea there will always be naysayers and the Hogeway approach to dementia care is no exception.
English bioethicist and deputy chair of the London-based Nuffield Council on Bioethics, Julian Hughes, is troubled about the approach. In 2009, the council issued a report that stated the Hogeway approach “serves to undermine the remaining grip the person with dementia may have on the everyday world.”
I disagree with the position of the illustrious bioethicist and his council. Hogeway is for people with severe dementia. If they are happy living in a pretend world, let them be.
FANTASY IS FINE
Is the Hogeway philosophy and approach to care condescending or patronizing? I don’t care. We are talking about irreversible progressive dementia. The patient’s happiness, safety, and quality of life are the important issues. Let them live in a fantasy.
I welcome innovative ideas in nursing home care. The Hogeway philosophy is a breath of fresh air and a far cry from how many of people with severe dementia are institutionalized in sterile nursing homes. These settings may be safe but they are unfamiliar to the patient. (I know of cases where dementia patients were essentially warehoused until death.)
As the population ages, society will face increasing amounts of dementia. We need to welcome creative or novel approaches to their care that gives them increased quality of life.
According to the Alzheimer’s Society of Canada, one in 20 people over the age of 65 has dementia. The numbers steadily increase so that one in four Canadians over the age of 85 has Alzheimer’s disease. We need innovative ways to care for this population.
The Hogeway approach is worth considering. It’s not for everyone, but it allows some people with severe dementia to live in healthy, happy, safe, and stimulating environments that resemble normal community life.
THE COMMON GOOD
This taps into the common good that I have previously written about and which Catholic teaching directly addresses (Catechism of the Catholic Church, 1905-27).
The dignity of people with severe dementia involves protection from the harshness and cruelties of the world. The common good is to be understood as “the sum total of social conditions which allow people, either as groups or individuals, to reach their fulfillment more fully and more easily.”
Reaching fulfillment means different things at different times, stages, or states in people’s lives. Fulfillment for a person suffering from severe dementia may simply mean being happy and as free as possible from anxiety. If we can put environments in place to help achieve that goal, let’s do it. If reality is beyond reach or too fearful, let them live in a fantasy.
The only reality some people need to know is that they are loved.
Mark Davis Pickup has lived with aggressive multiple sclerosis for over 28 years. Although electric wheelchair dependent, Mark has spoken across the United States and Canada promoting the sanctity, dignity, and equality of all human life. He has addressed politicians and legislative committees (both Canadian and American), university forums, hospital medical staffs, religious and denominational leaders, community groups, and organizations about the critical importance of protecting all human life from conception to natural death. Mark is also a widely published writer on bioethical and Christian issues. He writes a column for Canada’s Western Catholic Reporter newspaper. Mark is the recipient of numerous awards including the Monsignor Bill Irwin Award for Ethical Excellence, the William Kurelek Award for fostering respect and appreciation for the dignity of human life (Canada), and a Governor General’s Medal for Community Service.
This article has been reprinted with permission and can be found at wcr.ab.ca/Columns/OpinionsStories/tabid/70/entryid/6607/Default.aspx.