The Ingenium® Foundation focuses on different issues of dementia like dementia in acute hospitals, young onset dementia, digitisation, prevention and dementia in Bavaria.
The Ingenium Foundation is a non-university scientific organisation well connected in science and self-help and de facto acting as a gerontological institute. Since the beginning of its work the foundation has been addressing important topics related to dementia in Bavaria and dementia as a whole, including people with dementia in acute hospitals, challenging behaviour, landscaping, migration, digitisation, rare dementias, prevention and ethical issues, developing the practical implementation in projects with various important co-operation partners.
The Ingenium Foundation is always looking at these challenges from the perspective of people with dementia and their relatives, as well, as our primary goal is to enhance their quality of life.
The Ingenium Foundation was established in 2004 by the generous couple of donors Helmut and Mathilde Greil and their daughter Doris Bark-Greil. At this time Helmut Greil had already been suffering from Alzheimer’s disease for some years. Thus, the idea was born to put up a nursing home specifically tailored to the needs of people with dementia in Bavaria.
This work was the nucleus of the foundation’s scientific development, especially disseminating evidence-based methods for nursing and caring for people with dementia. Ingenium is working closely with the German Alzheimer Association as well as the Alzheimer Association of Bavaria, to help those with dementia in Bavaria.
People with dementia in hospitals
One emphasis of our work is on people with dementia in Bavaria and delirium in acute hospitals. For about one decade the Ingenium Foundation focused on a joint project development in hospitals with the Alzheimer Association of Bavaria as well as the German Alzheimer Association. We developed training programmes aiming to change the culture of dementia care in hospitals. These programmes are not only addressed to nursing staff of different education levels but also to physiotherapists, occupational therapists, social workers and other occupational groups. During our work it became very obvious that clinicians also needed to be trained for a better understanding concerning the importance of Alzheimer’s disease to inpatients and their next of kin, especially in terms of challenging behaviour (behavioural and psychiatric symptoms of dementia).
Case conferences performed during the project revealed that identification of patients with delirium superimposed on dementia (as well as elderly patients with delirium and without, but without dementia) was mostly unsuccessful. So, we developed a questionnaire on understanding diagnostics for the detection und understanding of challenging behaviour. We could demonstrate that the attitude of nursing staff as well as physicians towards patients with dementia changed in a positive way.
Another important step was to convince our partners (Robert Bosch Foundation and German Alzheimer Association) to fund a study determining the proportion of people with dementia in Bavaria among inpatients. GHoSt – General Hospital Study impressively demonstrates that 20% of the patients aged 65 years and above in acute hospital wards are suffering from dementia.
As one of the results of this paper the Ingenium Foundation was involved in the development of guidelines for dementia-sensitive hospitals of the DEKV (Deutscher Evangelischer Krankenhaus-verband), the federation of evangelical hospitals in Germany.
Finally, aiming to learn from other European countries, the Ingenium Foundation organised a tour for about 30 dementia experts, on behalf of the University Witten-Herdecke, of dementia-friendly hospitals in Norway and the Netherlands respectively.
Digitisation and dementia
We believe that digitisation will have an immense impact on nursing and caring for people with dementia. It is an emerging field, so its impact cannot be judged at the moment. Digitisation does not only include electronic or digital patient files. It also includes all facets of artificial intelligence (intelligent assistive technologies) combined with ambient assisted living, robots, mobility and rehabilitation aids, handhelds and multimedia, software and apps, wearables and human-machine interfaces.1
We are wondering about the implication for people with dementia in Bavaria and their family caregivers in different social settings using augmented and virtual reality devices, speech recognition software like Alexa® or Siri®, autonomous driving in combination with speech recognition and ambient assisted living systems in the future. The benefit, for example in terms of quality of life, is not necessarily clear cut, and using these devices raises a lot of ethical questions. What about the idea of using a WLAN camera system via internet for monitoring a person at home? This may provide a sense of security for a son or a daughter of a person living with dementia. The devices needed are already available. There are also ethical questions about the use of robots like Paro® or Pepper® and the paradigm of personal interaction in nursing and caring. What about GPS systems and geo-fencing devices monitoring where a patient is? All issues mentioned above also depend on the stage of the disease and the age of the patient, respectively. These questions reflect just some impressions of what digitisation may mean to our society and people living with dementia. We think further approaches should be precisely assessed and carefully considered. This also includes participative development and design of the devices.
Young onset of dementia
Persons experiencing dementia in Bavaria at an age below 65 years are considered to have a presenile form of dementia. The cause of dementia may be Alzheimer’s disease with genetic components, but there are also cases of frontotemporal degeneration (FTD). Behavioural variant FTD (bvFTD), the most common form of FTD, is responsible for about half of all cases of this disease. BvFTD is also frequently referred to as frontotemporal dementia or Pick’s disease.
“The hallmarks of bvFTD are personality changes, apathy, and a progressive decline in socially appropriate behaviour, judgement, self-control, and empathy. Unlike in Alzheimer’s disease, memory is usually relatively spared in bvFTD. People with bvFTD typically do not recognise the changes in their own behaviour or exhibit awareness or concern for the effect their behaviour has on the people around them.”2
The disease is a major challenge for caregivers because of the challenging behaviour and the special needs of the patients, including disinhibition, apathy, emotional blunting, compulsive behaviours, changes in eating habits and problems with executive function. These symptoms in combination with a lack of insight usually impede appropriate care. Such patients are usually excluded from care at nursing homes – at least in Germany.
We will be working on this issue over the next three years, especially on the nursing and caring system in Bavaria.
Prevention of dementia in Bavaria
The work of the Ingenium Foundation has focused on the prevention of dementia in Bavaria and Alzheimer’s disease in particular for one decade now. There is increasing evidence that a big percentage of incidents (up to every second case) may be avoided by modification of lifestyle factors such as nutrition and physical, cognitive and social activity. Alcohol, nicotine and education level seem to be important factors, as well. Most of these factors are influenceable for individuals throughout their lifetime. There seems to be a strong correlation between vascular and neurodegenerative diseases, so ‘what is good for your heart is also good for your brain!’
Thus, the Ingenium Foundation has raised an awareness campaign on prevention of dementia in co-operation with the German Alzheimer Association and the Bavarian Pharmacists Chamber. It reflects on such risk factors as high blood pressure, diabetes, obesity and lack of exercise as well as social withdrawal or high TV consumption, all of which are considered as being in a relationship with each other.
The idea of prevention may become even more important as the development of drug therapies for curative treatment does not seem to be promising at the moment.
To achieve our objectives, we are working closely together with strong and capable partners, including the DZNE (German Centre for Neurodegenerative Diseases), the University of Heidelberg, the Technical University of Munich, the German Alzheimer Association and the Robert Bosch Foundation.
- Ienca, M, Fabrice J, Elger B, Caon M, Pappagallo AS, Kressig RW & Wangmo T. (2017). Intelligent assistive technology for Alzheimer’s disease and other dementias: a systematic review. Journal of Alzheimer‘s Disease, 56(4), 1301-1340
- AFTD: The Association for Frontotemporal Degeneration: www.theaftd.org/what-is-ftd/ftd-disorders/behavioral-variant-ftd-bvftd/
This article will appear in issue 7 of Health Europa Quarterly, which will be published in November 2018.