Dementia patients who are kept active in their fields of interest appear to experience improved quality of life and better health. Research will now reveal whether this is really true.
When entrepreneur Heidi Wang's father was diagnosed with dementia in 2006, she employed three people to help keep him active. The results were so promising that two years later she went ahead and commercialised her idea that individually tailored activities could have positive health effects.
Today her company, Noen AS, based in Steinkjer, has branches in Trondheim and Nord-Trøndelag county, and a project is to start in which researchers from SINTEF and Nord-Trøndelag University College (HINT) will attempt to document the findings so far. The project has been called KUPA, short for Kunnskapsbasert Personsentrert Aktivitet -- skills-based person-centred activity.
"We will use a method which will ensure that our starting premise is correct -- that is, encouraging dementia patients to be active in fields which interest them," says Bjørn Magnus Mathisen at SINTEF. "Then HINT will propose health-promoting criteria and Heidi will be able to observe her clients in order to confirm or disprove her hypothesis."
A good match
The company's starting point is to link elderly dementia sufferers with counsellors who can help them be more active. The counsellors should work part-time, equivalent to no more than a 50% paid position, and must show that they have the right personal qualities.
Heidi Wang has developed extensive co-operation with the Norwegian Labour and Welfare Administration (NAV) in Sør-Trøndelag and Nord-Trøndelag counties. Making use of job-seekers in the NAV system to provide guidance and support to dementia sufferers was a stroke of genius: "These are often people who have dropped completely out of working life. They may be receiving disability benefit or may have experienced crises from which they have emerged as stronger people. We train and instruct them, employ them and pay them by the hour, and assign tasks for them to do," Wang explains. "These are resourceful people who are good at making use of our concept of person-centred care and practise it in a considerate manner."
Clients who contact Wang by telephone or via her website are usually relatives of dementia patients, and considerable importance is placed on finding the right match between counsellor and patient based on information the relatives provide about the patient's interests and personal qualities.
The activities involved are wide-ranging and take place in the home or local community. They may be anything from berry-picking and cookery to fishing and going to concerts. Wang points out that it is not the activity itself that is health-promoting, but the way in which it is organised and practised. To get results, at least a couple of hours of activities are recommended twice per week. "The overall goal has always been to improve quality of life through mastering, meaning and relevance for the dementia sufferer," says Heidi Wang. "This also means considerably reducing the strain on family members, who have regularly reported not only that patients' quality of life has improved, but also their state of health. This is what I'm now going to try to document," she adds.
Good health criteria
Bente Nordtug, a research scientist at Nord-Trøndelag University College, will use literature related to the subject to determine and develop criteria for what is health-promoting, to give the Steinkjer company some parameters by which to measure the success of its service. "This can be our clinical alibi -- the way we demonstrate if person-centred activity will satisfy the criteria," says Wang.
Plusses and minuses of the current service
To achieve continuity in its work, the company depends on on-going studies of its users. It also needs a tool which can be used as its operations expand and the distance between the originator of the concept and the individual counsellors increases. A new methodology will enable us to quality control of the services, and the SINTEF researchers will look at both the content and frequency of the services and the way in which they are provided. Health science researchers Nina Vanvik Hansen and Hanne Linander have already interviewed counsellors and arranged workshops in order to determine the strengths and weaknesses of the current service. They are now looking at all the contact points in order to design a new, improved service. At the same time their colleague, ICT researcher Bjørn Magnus Mathisen, is working on an assessment system which will be able to draw its own conclusions from the collected data.
"This may look a bit like a dating service, except that we are dealing with a rather wider field, involving medication and health-promotion parameters in addition to the subject's interests and strengths. Our data cover interests, mental capacity, what field the subject has previously worked in, physical fitness, and so on." An example he gives is that the company may register the background and interests of client "X" and discover that he benefits from hiking in the forest. Then a new client arrives who has the same interests as X. Walks in the forest may also be a good solution for him. It's the same when counsellors and clients are matched: here too, the existing list of clients is compared with new ones, to provide suggestions for suitable counsellors. "This type of assessment and matching is important both when a dementia patient enters the system and if a counsellor is ill, goes on holiday or leaves us," says Mathisen, who points out that for the researchers this is a dream project: "Not only do we make use of technically advanced intelligence techniques, but the field also fulfils SINTEF's vision of "technology for a better society."
Worth its weight in gold
If the founder of the little company obtains documentation to support her hypotheses, this will be worth its weight in gold for the Norwegian healthcare system. There has been little documentation of dementia as a condition, and the support system often becomes involved too late in the course of the illness. If individually tailored activities can delay the illness, reduce the need for medication, prevent anxiety, depression and aberrant behaviour, the project will be of considerable socio-economic value.
The KUPA project (2012-2015) is a user-controlled innovation project, financed by the Research Council of Norway and the Kavli Foundation. The participants in the project are Nord-Trøndelag University College, SINTEF, Kantega and Uno IT.
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