Dealing with dementia: A personal insight into care
Dementia and its many faces
Dementia is becoming an increasingly central issue in our society as the population ages and cognitive impairments become more common. When we think of dementia, we often think of films such as "Honig im Kopf" with Didi Hallervorden, who plays a confused but lovable older man with Alzheimer's disease. Or we have the image of an elderly woman in a nursing home who is constantly stroking a stuffed cat or sitting at the bus stop. But dementia is more complex: it has many faces and can have various organic causes. It often begins insidiously with social withdrawal or by forgetting words or appointments and can worsen over time or combine with other forms of dementia.
Dementia care at home
The care of my father, who died at the age of 83 after 15 years of care, began with a cardiovascular disease that triggered vascular dementia. Fluctuations in blood pressure and blood sugar regularly led to dementia symptoms that could disappear just as suddenly as they appeared. Over the years, I was able to observe the progressive process, which was eventually accompanied by Lewy body dementia. This disorder severely affected his sleep-wake rhythm and led to episodic hallucinations of imaginary guests, whom he perceived as party guests in his living room. These hallucinations often seemed to bother him less and sometimes even amuse him. At times he would proudly tell me that the night had really gone wild again.
There were days when he was so hungry that he ate the entire fridge, like the very hungry caterpillar. On other days, however, he had no appetite at all, which was extremely unfortunate given his diabetes. As a carer, I had to get creative, whether it was with a homemade honey shake, Königsperger meatballs or special meatballs with black bread in the style of great-grandmother's, to motivate him to eat. I cooked so many old meals that my husband and children no longer knew what culinary time zone we were in.
There were also times of deep sadness when even the presence of his grandchildren could not cheer him up. Our dogs were irreplaceable mood-lifters in such moments!
The importance of music, objects and photographs and the stories that went with them was crucial in my relationship with my father. In earlier times he had often told me stories from our family history, coupled with his unmistakable sense of humour. When he was no longer able to tell these stories himself, I took on this role and repeated them for him. Every time I brought up these memories you could almost see a spark in his eyes and it often made him laugh out loud. Music also played an important role, especially operas, operettas and also more modern pieces such as James Last's "Biscaya" which took him back to moments from his past.
Scientifically, it is known that such activities can actually have a positive effect on people with dementia. Music and retelling familiar stories can activate memories and elicit emotional responses, even when other cognitive functions are already impaired. Studies show that such stimulating activities can slow down degenerative processes in the brain by keeping neural networks active and supporting communication between brain cells.
The phenomenon that familiar stimuli can bring people with dementia back is often explained by the concept of "reminiscence therapy." This involves deliberately drawing on positive memories and experiences from the past to improve the well-being and quality of life of those affected. These approaches are not only therapeutically valuable, but also help to maintain a connection and give people with dementia back a piece of their identity, even as the disease progresses.
challenges
Caring for my father presented me with immense challenges. Due to long waiting times for a care place, I had to find numerous creative solutions. Unfortunately, our care world is not optimally designed in terms of both daily care and dealing with the health system. From communication with the health insurance company to administrative hurdles to the often inadequate care provided by family doctors for patients with limited mobility and the lack of understanding in the social environment, it was a constant balancing act.
Since my father was no longer mobile and we had no room to take him in, we had to completely adapt his apartment to his needs. We installed cameras with fall monitoring in every room and introduced numerous technical aids such as an emergency call button, fall watch, drinking reminder, bath lift, nursing bed, walker, wheelchair, walking stick, wound care kit, incontinence underwear and hearing aids. The stove and other potential sources of danger were also deactivated. The nursing service organized the administration of medication several times a day and my family managed to cope with everyday life while I was not there for them. Somehow it worked, even if everything went differently than planned.
Lessons from nursing experience
This long experience has taught me that caring for someone with dementia is not only an emotional and physical challenge, but also a logistical and technical one. It requires creative solutions and a deep understanding of the individual needs of the person affected to ensure safe and dignified care.
Let us not forget the caring relatives
Caring for someone with dementia is a 24/7 job that relatives do almost free of charge to the state. Relatives experience first-hand how the disease erases the memories of a loved one. They struggle daily with various dementia symptoms such as fear, aggression, defensiveness, grief and mistrust, which represents a significant personal burden. It is important to recognize and support their immense performance and commitment.
The need for a better care system
The challenges facing our care system are enormous in view of demographic change. As the number of people in need of care increases, fewer and fewer care places are available. Existing care facilities often have staff shortages - while physical care is just about managed, there is often too little time for the residents' activities and psychological care. This situation also presents an immense challenge for caregivers. Imagine having only five minutes to feed a helpless person, regardless of whether they want it or not - five minutes to manage a basic human interaction.
For most nursing home residents, a place in an exclusive senior care facility remains out of reach due to financial constraints. As a result, many are dependent on the mental care of their relatives or volunteers.
One aspect that urgently needs to be improved is the possibility for GPs to carry out regular home visits again, which are appropriately remunerated. Currently, visits are often only made to people who are dying, as other visits are not economically viable. This means that many people with dementia do not receive the medical and therapeutic care they need.
It is crucial to establish the term "home geriatrics" in Germany in order to enable comprehensive care at home. This also includes regular visits from occupational and physical therapists. The current high level of bureaucracy and financial burden on health insurance companies and the lack of infrastructure, especially in rural areas, make it difficult for many affected people to access these necessary measures. This gap in the system must be closed urgently in order to ensure holistic and continuous care.
Innovative approaches and technologies in care
During my time as a carer, I have learned the importance of innovative approaches and technologies. Devices such as emergency call buttons, fall monitors and drink reminders can make a big difference. They not only provide security but also a degree of independence for those affected. It is crucial that such technologies are further developed and made more accessible to facilitate care at home.
Dementia and death: an inevitable process
Dementia is a disease that progresses inexorably and cannot be cured despite all therapeutic efforts. Therapies can slow the progression, but not stop it. As dementia progresses, there is a gradual decline in cognitive and physical functions. This process often begins with urinary and fecal incontinence, followed by other physical ailments. The immune system is weakened, which means that dementia sufferers become more susceptible to other diseases such as flu or infections, which often lead to their death.
A recent study by Smith et al. (2023) found that patients with advanced dementia often die from complications such as infections, which are favored by the weakened immune system. These complications can accelerate the dying process and further contribute to dementia-related degeneration.
In all dying people, including those with dementia (study by Jones et al. 2024), it is known that certain neurological processes can remain active until the end of life. This includes, in particular, auditory perception and consciousness, even when other cognitive and motor functions are severely impaired. Studies and clinical observations have shown that people in the dying process are often able to respond to auditory stimuli and maintain emotional attachments, although they may be in a twilight sleep or coma.
This is particularly significant for people with dementia, as the disease severely impacts cognitive and emotional function, but can leave certain neurological mechanisms associated with auditory processing intact. This allows them to respond to stimuli from their environment potentially until their final moment, which can be considered a kind of last opportunity to interact with the outside world and maintain social connections.
Understanding these phenomena is of great importance for palliative care and supports the importance of a dignified dying process in which the presence of relatives and familiar sounds can play a role, even when the patient is unable to respond verbally or motorically. It remains a challenge to explore these mechanisms in more detail and understand how they may impact the dying experience of people with dementia.
The role of relatives in the dying process
This is an incredibly stressful time for the loved ones. They watch their loved one gradually deteriorate and ultimately die. The emotional and physical stress is enormous, and yet they bear the brunt of the care and emotional support during this time. It is vital that they are not left alone during this time and receive support from both the health system and their social environment.
In Germany, relatives who need support in dealing with the dying process and grieving can turn to local hospice associations. These associations offer outpatient services and are often closely linked to palliative teams that specialize in caring for seriously ill people. Hospice services and palliative teams support not only those affected themselves, but also their families, offering both medical and emotional support.
After the death of a loved one, relatives can often join grief groups to process the loss together and to exchange ideas with others in similar situations. These groups offer a safe space to talk about feelings and find support.
For more information on post-care and the challenges that caregivers face, you can read more in my other blog post. It is known that many caregivers develop health problems themselves, be it physical or mental, after the long period of caregiving.
Dealing with dementia: A personal insight into the
😍 very good!