Growing old with dignity: which role for eHealth?

Societies are ageing across the world and this comes with a range of challenges: increasing numbers of age-related diseases, a rise in healthcare costs, a drop in the number of people working in health care, and an urgent need for housing and cities suited for older people. Digital innovations, such as robots, wearables, telecare, and smart cities are given a prominent role in solving these challenges and for the purpose of sustainable, healthy ageing and wellbeing.

Governments, knowledge institutes, health insurance companies, health care providers and their workforce, older citizens and their network are dealing each in their own way with the implementation of these technologies. The Covid-19 pandemic, requiring social and physical distancing, forced wide-scale application of remote digital healthcare, reducing human contact.

In this first article of the trilogy we address the importance of recognizing the diversity in needs and digital capability among older people. We also emphasize the importance of social and physical contact as the basis for growing old with dignity.

Worldwide people are getting older thanks to a healthier lifestyle, better hygiene and medical developments. However, the level of ageing differs per country in terms of profile and pace. The World Health Organization (WHO) and the United Nations (UN) defined three categories of societies: ageing society, aged society and super-aged society. An ageing society is defined as a society in which more than 7% of the population is 65 years of age or older (65+). An aged society is defined as a society in which more than 14% of the population is 65+. And a super-aged society is defined as a society in which more than 21% of the population is 65+.

According to Statistics Netherlands (CBS) 3,392,507 of the Dutch population is 65+, representing almost 19% of the population. This puts The Netherlands in the aged society category. According to CBS, in 2025 21% of the population will be 65+ and thus we will reach the status of super-aged society in just 5 years from now. In other words, one out of five Dutch people will be 65+.

This development forces us, like so many other countries around the world, to think about the circumstances in which some older people are compelled to live during their later years and puts a great deal of pressure on elderly healthcare and other provisions needed for the elderly.

In the second paper of this series, we will learn how Japan approaches the many societal aspects of this ageing phenomenon: both the opportunities and the challenges. Japan, in which more than 25% of the population is aged 65+, is already since 2013 at the level of a super-aged society.

To reduce the growing pressure on healthcare in ageing societies, eHealth is increasingly being implemented in practices of disease prevention and care. eHealth entails the use of information and communication technologies, and especially internet technology, to support or improve health and healthcare. Examples of eHealth are robot pets for companionship in dementia, wearables to monitor movement and position from a distance, and telecare provided by the general practitioner.

The use of eHealth applications – and the success of its implementation – in providing healthcare for the elderly across Europe, Japan, Mexico and the United States is discussed in the third article of this series based on a report of the European Parliamentary Technology Assessment Network: EPTA 2019: Technologies in care for older people.

In a Letter to the Dutch Parliament (in Dutch) the Rathenau Institute also gave important points of attention for the use of eHealth among elderly:

• In policies for stimulating the development and implementation of eHealth a vision on future-proof elderly care should be leading. This vision should take into account housing needs for all kinds of older people, eHealth opportunities in nursing homes and resources to maintain them, and the necessary training needed for healthcare professionals.
   
• The diversity among older persons should be taken into account. This includes the context of their network, their technological skills and preferences.
   
• Ethics by design should be applied while designing and using eHealth for elderly. For example, electronic advice based on artificial intelligence can make (older) people feel less confident in their own judgment. Previously, the Rathenau Institute called for “the right to meaningful human contact” to be adopted as a fundamental human right, necessary to make the robot age human friendly.

eHealth is seen as particularly relevant under Covid-19 circumstances, meaning that social distancing and social isolation are necessary. To help contain the virus and protect the health of high-risk groups – of which the elderly form the largest part – eHealth is called upon to provide healthcare from a distance.

Although eHealth is capable of providing healthcare from a distance, the report of SCP (in Dutch) shows that, as the current Covid-19 pandemic is prolonged, protecting public health for many groups comes at the expense of the overall quality of life and even the quality of society. Research by Trimbos Institute (in Dutch) shows that the lack of social contact results in loneliness among the elderly, both among those living independently at home as well as among those living in nursing homes. This is also shown in a study of the University of Amsterdam (in Dutch).

A strict norm of social distancing during this Covid-19 pandemic, which resulted in taking care of and communicating with the elderly from a distance, indicates that the focus is merely on the physical condition of the elderly. This contradicts the broad concept of health formulated by the WHO, which defines health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”.

It was Weiss (1973) who first mentioned the loneliness resulting from social isolation, called social loneliness. Social loneliness is linked to a lack of social integration, meaning the lack of contact with people with whom one shares certain common characteristics, such as friends.

Weiss also mentioned a second form of loneliness, the one that results from emotional isolation, called emotional loneliness. Emotional loneliness occurs when someone lacks a close, intimate bond with another person, in most cases a life partner. According to Weiss, the lack of such an emotional relationship cannot (sufficiently) be compensated by a strengthening of social integration and vice versa.

Both forms of loneliness are meaningful in their own way. In the case of the elderly, the risk of loneliness is increasing as their social network is decreasing: children are grown up and live their own lives, family, friends and possibly their life partner are dying one by one, the deteriorating physical condition of many elderly is preventing social interaction, and so on. Isolating the elderly in their homes, even though it’s to protect them from a viral infection, enhances the chances of loneliness even more.

With loneliness as a result of social isolation, healthcare professionals often emphasize the right to age with dignity. This is quite a fuzzy term and consequently one often talks about ageing with dignity, but does not act accordingly. But according to Bieri (2015) dignity takes shape in the interaction between the individual and his or her environment. Positive interaction with others is important for shaping dignity; it confirms in being human. Dependence on aid or help does not in itself mean a threat to dignity, this only happens when inequality occurs and – within that dependency relationship – when self-direction and independence are violated. As a result of social isolation, the positive affirmation disappears: a lack of physical social contact makes people feel useless, inferior and unseen. Hence, social isolation diminishes dignity.

The consequences of loneliness and a reduced feeling of dignity raises the question if social isolation, social distancing and telecare correspond to the need for care of the elderly themselves. There have been many examples which came along during the Covid-19 pandemic, showing the complexity of this situation.

The case At a distance close by (in Dutch) showcases how case-manager of a nursing home, Lies Orthmann, and nurse Teun Toebes dealt with these circumstances in taking care of elderly with dementia, also those still living on their own. Orthmann emphasizes the importance of personal physical contact, including non-verbal communication, in order to create a correct image of the client’s situation and to relay clear communication from a nurse to a client.

Telecare during covid-time is insufficient to create a correct image of the clients and their non-verbal communication. This drawback of telecare also became apparent in the survey (in Dutch) carried out among 710 professionals, managers, coordinators and volunteers in social work. In the end, Orthmann let the elderly with dementia who were still living at home decide what kind of care they preferred: physical with social distance or healthcare at distance. Orthmann and Toebes applaud self-direction. A quote by Toebes: “We must not allow ourselves to determine what is important for people with dementia. Even if you already know the answer, you have to keep asking the question. The freedom to come up with one's own answer gives many people a sense of dignity. And if this is no longer possible, then the family has an important voice”.

Orthmann’s and Toebes’ attitude is in line with the principles of Bieri, but also with the concept of positive health of Machteld Huber, in which self-direction and resilience are central aspects. Within this concept, health is described as: The ability of people to adapt and direct themselves in the light of physical, emotional and social challenges of life.

In an earlier article by the Rathenau Instituut (in Dutch) we reflected on the concept of positive health. We warned that the policy of stimulating and relying largely on self-sustainability in vulnerable people (including some elderly) is not doing justice to the needs and competencies of many (older) people, and can even violate human rights. This risk is particularly high when these elderly are using eHealth, in which the digital, medical and commercial domain merge. This asks a lot of people’s judgment and knowledge, for example on which technology is safe and which parties can be trusted with intimate personal data.

According to Deeg, Van Tilburg and Huisman (2020, in Dutch), nuance is in order. Elderly people do not form a homogeneous group that can be discussed in general terms. As we have low-skilled older people with serious health problems and older people with few means of maintaining contact with their loved ones, there are also many older people doing well, especially when they are in reasonable to good physical condition. The Covid-19 discussions present all elderly people from the age of 70 and over as extra vulnerable. But we must be careful not to lump all the elderly together. However, what would benefit them all is a policy and healthcare based on dignity.