Dementia is a topic which increasingly affects our society. According to the latest calculations, there are currently around 1.7 million people in Germany living with dementia – a figure which will increase to 3 million people by 2050. Since the majority of sufferers are cared for at home, home care is enormously important.
The importance of home care is increasing
Relatives play a key role in caring for people with dementia. Around 80% of people suffering from dementia in Germany and around 70% in Bavaria are cared for at home, usually primarily by their spouse, children or other close relatives. Home care is therefore of enormous importance. It not only allows sufferers to live in their familiar surroundings, but also makes a crucial economic and societal contribution.
Over time and as the disease progresses in sufferers, however, the everyday challenges can become so onerous that relatives are no longer able cope with providing care and support alone. Because patients suffering from dementia often develop behavioural and psychological problems with the progression of the disease which also result in excessive strain on carers. In the literature, these problems are referred to as BPSD (behavioural and psychological symptoms of dementia).
Aggression in the sense of agitation, motor hyperactivity (wandering), disinhibition and restlessness number among the most common behavioural problems. This is referred to as challenging behaviour. The most common psychological symptoms include depression, anxiety, hallucinations and delusions. These problems put massive strain on carers. Until now, there were no treatments for these challenges and strains which are accessible to all sufferers. Attempts are occasionally made to manage the problems with medications, the effectiveness of which may be low or even lacking entirely in the individual case. Alongside drug treatments, non-drug treatments which attempt to improve or at least temporarily stabilise the symptoms and life skills are also recommended in the guidelines for dementia treatment.
Non-drug treatments are preferred
Most forms of dementia are incurable. However, with appropriate and early treatment, the accompanying psychological and behavioural symptoms of dementia can be managed and delayed, depending on the stage of dementia. Based on what we know today, the use of drug treatments for behavioural and psychological symptoms of dementia is only recommended for use in patients with severe symptoms. In contrast, non-drug interventions at all stages can contribute to making sufferers happier and keeping them independent for longer through positive experiences.
There is an appropriate approach, such as behavioural therapy, specific training or music therapy, for every stage of the disease. Studies have provided evidence of the positive effects of the latter in particular. All stages of dementia can be improved with music therapy. However, for many sufferers who live and are cared for at home, it is difficult to take advantage of relevant offerings because you have to get to clinics or surgeries for them. This is therefore precisely the starting point for the HOMESIDE (“home-based family caregiver-delivered music and reading interventions for people living with dementia”) research study, funded by the European Union and the Ministry of Education and Research.
The international study involves a total of 495 couples in Australia, Germany, Great Britain, Poland and Norway. It should improve informal care (care from relatives) by training relatives providing home care to use music and reading interventions in order to regulate behavioural and psychological problems, above all, and therefore also the quality of life and well-being of people with dementia. Here, participating couples are randomly assigned to the music group, the reading group or the control group. Relatives providing care are then guided by qualified experts, in a multi-week training course at home, in the beneficial use of music or texts in everyday life. Owing to the coronavirus precautions, this has been done via video calling since June 2020.
Better connection through “shared moments”
Prof. Dr. Thomas Wosch, professor of music therapy at FHWS and project director for HOMESIDE Germany, calls this process “skill sharing”, i.e. sharing of music therapy skills with the relatives providing care: “For music interventions, we start by asking what experiences are present in day-to-day life. Do people sing together, for example? Do they listen to music? Is there an instrument that is played, favourite songs and dances, and so on. And from this starting point, we look at how it can be used in everyday life”. This should result in so-called “shared moments” which lead to improved connection, as has previously been shown in pilot studies.
Reading interventions work with familiar stories, poetry, verses from the bible or photo albums – depending on what is familiar and internalised for the sufferer. “So image and text materials or tales which were good and important at work or in hobbies,” explains Wosch. The programme lasts three months in total during which the couples go through the training three times, with constant contact over the phone in between and with interim findings being collected. Psychologists also evaluate the couple with regard to various factors of their well-being and quality of life using questionnaires at three points before, during and after the project.
Activities are determined individually
Although the therapists work with what is available, there is a clear protocol for how the procedure is established with the individual couples. “We manage this in the manuals for this guidance, in that we specify selection of the individual preferred activities,” says Wosch. Here, music activities include singing, listening to music, playing an instrument and dancing or moving to music. These can then be used individually or in combination. “It is assumed that the options which are biographically relevant and which the couple are already familiar with will be chosen, but all four activities are presented in the first session because much is often lost or an instrument is then pulled out of a corner,” explains Wosch. The same process is used for the reading activities.
Although music can help to improve well-being for the participants, it can also have negative effects, as Carina Petrowitz, music therapist for HOMESIDE, explains: “Fundamentally, music is a very emotional field which can also trigger negative feelings. It may even make someone angry if they haven’t quite hit on the right song. It should therefore be approached with a great deal of intuition and experience”. In order not to cause damage, the use of highly-trained music therapists who are in constant contact with the couples is therefore enormously important. This support ensures a beneficial approach and protects the couples. This was confirmed by the ethics commission who reviewed and approved this procedure.
In addition to the reduction of BPSD, the participants’ quality of life and relationships, the abilities of the relatives providing care and their health support (resilience), health economics aspects are also analysed in order to determine the cost-effectiveness of the music and reading interventions. “We are hoping to reduce the symptoms of BPSD in everyday life and achieve long-term improvements in this large and representative study,” says Wosch. Full findings are expected in early 2023.
