Dementia is one of the top ten causes of death in our country, according to INE mortality data from 2015. This is especially true for the most common form of dementia, which is Alzheimer's disease. In 2017, the report "Social Impact of Alzheimer's Disease and other Dementias" by the Brain Foundation announced that there were around 500,000 cases of dementia in Spain; a figure that will double in approximately 30 years and which is alarming in that most people affected by this disease are highly dependent. Eighty percent of patients are cared for by their own families, while the remaining percentage live in centres with specialised staff who are in charge of medical follow-up and daily accompaniment of the patient.
Older people with dementia are exposed to the same dangers as any older adult, but they are also victims of their own particular handicaps. For example, they suffer from more illnesses than the general population, especially chronic illnesses. They may suffer more falls and are more burdened by loss of mobility. They also have an increased risk of hospital admission with longer average stays. Moreover, if they live in institutions, they face the "three plagues" described by Dr. Bill Thomas (The Eden Alternative®), i.e. loneliness, feelings of uselessness and boredom, which fall upon them with the greatest virulence. How does boredom affect dementia patients living in specialised centres in particular?
Almost a month after publishing the first part of this two-part series on the pairing of 'boredom' and 'dementia' in the elderly, I am back - at last, after a period of absence due to a family bereavement - to answer this question as far as possible. And I stress that I intend to do so as far as I am allowed because studies that have examined the relationship between these two phenomena in institutionalised elderly people are scarce. In Spain, specifically, none have been carried out; but this is not surprising considering that we do not even know the exact number of people living with dementia: how many of them are bored and how they experience boredom! Nor has any research been carried out on boredom in older people - let's not forget that. This means, unfortunately, that we have also not stopped to think about how to alleviate it if necessary. Is it? It is. The few available sources confirm that boredom is a serious problem for older people with dementia living in institutional care.
To the best of my knowledge, after having carried out an exhaustive systematic literature review, following the methodology of the PRISMA model and consulting the main databases on scientific papers published in the area (PubMed, Web of Science, Chrocane Library, APA PsycINFO - ProQuest, PMC, CINAHL and Google Scholar for grey literature) in English, Spanish, French, Portuguese and Italian at any date, only the irradiation of the literature has been carried out, APA PsycINFO - ProQuest, PMC, CINAHL and Google Scholar for grey literature) in English, Spanish, French, Portuguese and Italian at any given date, only a derisory 5 studies have been carried out worldwide with the aim of clarifying the role of boredom in dementia patients. As there are so few of them, I will tell you a little about each one.
The first published paper on this topic was a scientific article written by Dr. Linda L. Buettner (Binghamton University) for the Journal of Gerontological Nursing in 1998 entitled "A team approach to dynamic programming on the special care unit". The author echoed a study by Professor Jiska Cohen-Mansfield (Tel Aviv University) and her team (1992) which indicated that after three months of observation in a home for dementia patients, it was found that 63% of the time the residents were doing nothing and very little time was spent on structured activities such as attending music therapy or social activities. Cohen-Mansfield did not mention boredom explicitly, but he did make it clear that scenes of violence and agitation were much more frequent when people were idle. Buettner then associated the boredom of having nothing to do with an increase in conflicts related to inmate behaviour.
Doing nothing is not always synonymous with boredom, although when it becomes an imposition it is common to arouse that experience that both Buettner and Cohen-Mansfield identified as responsible for encouraging agitation. Importantly, for the first time, boredom was seen as a risk factor in institutionalised dementia patients as a trigger for agitation and violence.
"Some sit for hours around the infirmary doing nothing. A few fall asleep in their chairs, while others take whatever clothes or furniture they find. Some get into altercations with others over seating arrangements, touching their things, snacks or simply to get the attention of the staff. Others wander from room to room picking up other people's shoes and clothes and leaving them everywhere" (Buettnet, 1998, p. 23).
How this quote reminds me of Mer's testimony in The Schindler's List Effect. The solution, for Buettner, was that the entire teams of the centres (including nurses, cleaners, nutritionists, social workers, administrators and physiotherapists) were trained to reduce boredom by adapting downtime to the needs of the patients by proposing meaningful activities of a therapeutic but also recreational nature (diversional-recreational interventions). To achieve this purpose, Buettner said, it was only necessary to know the people we were working with: their past hobbies, what games they liked, their social and cultural interests... The result would be a reduction in boredom and, by achieving this first, a decrease in episodes of agitation.
The design of an intervention aimed at fun and recreation did not materialise later by Buettner, but Cohen-Mansfield took over the study of boredom in older people with dementia. In her 2011 paper, "The meanings of delusions in dementia: A preliminary study" for the journal Psychiatry Research, she demonstrated that boredom resulting from the lack of activities in an Israeli nursing home increased the recurrence of delusions and paranoid confabulations about danger in patients with dementia as a resource through which to find engagement with meaningful activity. For example, patient P24, 81 years old, "think[ed] his mother [was] sick and that he ha[d] to get to her and take her to a doctor, or bring a doctor to her" (Cohen-Mansfield et al., 2007). (Cohen-Mansfield et al., 2011, p. 101). His delusions were accompanied by nervous behaviour and repetition of the expression 'I need to do something' (Ibid.), an indication of a lack of stimulation from the environment. Cohen-Mansfield's arrangement was to offer more sensory stimulation to the patients to compensate for this lack of meaningful activities.
This study had a sequel in 2012 in which Cohen-Mansfield and researcher Hava Golander (also from Tel Aviv University) showed that boredom was one of the main causes of increased hallucinations in dementia patients in another facility in Israel. Analysis of caregiver perceptions of hallucinations in people with dementia in institutional settings", published in the American Journal of Alzheimer's Disease and Other Dementias, again warned of the need to provide inmates with opportunities for engagement in interesting and fun activities that can mitigate boredom.
In another study published in Psychiatry Research in 2015, entitled "Which unmet needs contribute to behavior problems in persons with advanced dementia?" Cohen-Mansfield and colleagues conducted an observation in an American institution in which they found, complementary to previous work, that boredom due to lack of stimulation, along with loneliness and lack of social interaction, was one of the biggest problems in the day-to-day lives of residents, with the correlate again being the development of aggressive behaviour patterns.
Cohen-Mansfield's latest paper, this time co-authored with Barbara Jensen (Silver Spring), for the American Journal of Alzheimer's Disease and Other Dementias, followed the previous papers in theory, but made a leap in practice. In "Attendance in recreational groups for persons with dementia: The impact of stimulus and environmental factors" (2018) sought to materialise and test this fun-directed intervention that did not see the light of day with Buettner. In addition, the researchers pointed out that boredom not only increased agitated behaviour, but also increased the feeling of loneliness and led to a decrease in affect. The aim was to create a repertoire of activities capable of capturing the attention of the elderly in order to see whether these would indeed reduce boredom and thus its associated problems. And so it did. And so they called on the homes for dementia patients to implement more recreational group activity programmes according to the residents' preferences.
And that is as far as I can read. In general, the following conclusions can be drawn from the analysed articles:
An important point that I have not emphasised so far is that dementia patients require about 70 hours of care per week, which translates into an enormous overload for families or staff in care homes. As I pointed out a few months ago in the post Elderly caregivers also get bored, burnout is closely related to boredom, so we should also pay attention to what it is like for those on whom the elderly with dementia depend, whatever the care environment.
In Spain, unfortunately, we still have a long way to go in terms of dementia. I know that asking for attention to be paid to this issue of boredom in older people with dementia, when it is often ignored in normal circumstances, may already be too much for us. I only hope that, little by little, boredom will gradually gain the importance it deserves in view of the fact that, although it may still seem like a laughing matter to many, being constantly bored is no joke, especially not for dependent elderly people. The Eden Alternative is currently developing training courses in its philosophy of mutual care focused on the special needs of the elderly with dementia in order to eradicate loneliness, boredom and feelings of uselessness. Their approach is not specifically focused on tackling boredom, but admittedly it is a step in the right direction!