My grandma has dementia! – What is dementia grief and how to cope with it?

It is utterly shocking. One week ago, you were skyping with your grandmother, who showed herself excited about your return from a foreign country. Two weeks later, you and your family plod from dementia home to dementia home to find the most suitable accommodation for your sick grandmother. Sure, there might have been slight indications like brief moments of confusion. One time, she forgot her keys. Another time, she didn't remember what groceries she wanted to buy. But it all seemed so minor, or were we reluctant to face the truth? Dementia causes many changes and confronts us with seemingly insurmountable hurdles. Those affect not just the patient but their relatives and friends. Despite an early dementia diagnosis, it can take a long time before severe symptoms occur. In other cases, the illness progresses extremely fast. Such unpredictability results in a torturous process for loved ones. A process of concern, responsibility, and painful bewilderment because the destruction within a person's body is invisible. Any little glimpse of the sick person's old self elevates feelings of hope and optimism, lasting only until the next exacerbation forces you to accept the dreadful reality. It is a strenuous effort, both on a physical and a psychological level, not to crush under such exorbitant stress.

What is dementia?

The term dementia is often used as a disease concept. But rather than referring to a specific illness, it describes the co-occurrence of certain symptoms. The onset of most forms of dementia goes along with a significant deterioration of short-term memory and light impairments during everyday activities. Classic examples are the oven still heating after one has finished cooking, or the forgotten key. During the progression of the disease, patients suffer from severe disorientation and the deficiency of their long-term memory. Participation in life becomes more and more impossible as motor and cognitive processes malfunction. The causes of the disease can significantly vary since dementia describes more than 50 different pathologies. The most common type is Alzheimer's disease, a kind of primary dementia often wrongly used as a synonym for any dementia. Those categorized under primary dementias are incurable. Brain cells either necrotize or irreversibly agglutinate with proteins. Secondary dementias, however, are curable since they often result from metabolic disorders or alcohol poisoning. They only account for around 10% of all dementia cases, though.

What is grief?

One day death will overtake all of us. It is the last bastion humanity's idea of progress has not been able to overcome. By definition, it marks a person's physical and psychological disappearance. It is a painful experience for relatives and friends who mourn the loss of a loved one. Mourning describes a specific kind of sadness induced by the permanent loss of a person, a living condition, or an object. The mental and physical equilibrium is under tremendous stress and thrown out of balance. For many, it is the first time they come in touch with their mortality and feel impotent against the forces of life. Because of that, the bereaved often experience not just temporary but lifelong changes in their lives. Those can be positive, pushing a person to make use of every second they live, or negative, causing isolation, withdrawal, and suppressed feelings. Other typical symptoms include anger, disinterest, apathy or continuous crying on an emotional and nausea, lack of appetite, or insomnia on a physical level. Grief, however, is also the process of guiding the bereaved towards acceptance of their loss and enables them to find a way back into life. We often make the mistake of predetermining the longevity of grief, though, causing us to get angry when we don't meet our expectations. It is necessary to understand that there is no fixed time frame. Month after month may go by without any noticeable improvement. In addition, there is no logical order in which we experience mourning but a circular movement of constantly repeating emotions, reactions, and moods. Accepting this unpredictability is vital to abolish grief's control over our lives. Even after a long time, a single picture can cause us to spiral back into distress. The only relief we feel in those cases is through learning how to adapt to it.

Characteristics of dementia

The loss and the grieving process differ enormously when the deceased person is a dementia patient. Therefore, being aware of those differences can decrease the intensity with which we experience a loved one's demise. Unlike in a case of sudden death, relatives and friends experience loss and intense mourning while the person is still alive. Both unfold over a long period, seemingly with no end. On some days, grief seems to prevail. On others, one is ecstatic when a patient's long-gone personality shines through. Gratitude is essential because the situation can drastically change within a day or week.

Dementia Onset: Before any diagnosis, subtle cues make a change in the person's behavior noticeable. They repeat a question already answered a moment ago or return from the basement with no recollection of why they initially went there. It happens to all of us, especially older people, so often no one pays any particular attention. It is only when a pattern of previously unconnected situations emerges that we become suspicious. Nonetheless, we refuse to believe that it is anything other than a relative becoming slightly more forgetful. Furthermore, most people lack the experience to comprehend the onset of dementia, causing enormous trauma when the illness is first diagnosed.

Advanced Dementia: The disease process of any dementia form seems unpredictable to loved ones. Some weeks nothing changes, and at other times there are severe exacerbations. The months and years after a diagnosis are characterized by many losses. Gradually, the ill person loses their ability to participate in life as a self-determined individual. They are no longer able to drive a car or cook, and in the end, they cannot even satisfy their basic needs. The incapability to identify objects and humans is especially burdensome for relatives and friends. Each of these changes is yet another confrontation with the slow demise of a loved one. In this case, death represents only the climax of a gradual psychological decline.

Anticipated Grief: Bearing and processing the constant deterioration of a dementia patient is incredibly difficult for those who hold them dear to their hearts. Any form of situational acceptance is defeasible once another decline in the patient's abilities and skill becomes noticeable. The slightest variation in that person's behavior has a tremendous effect on the emotions of those affected. In 1944, Lindemann first coined this heightened reaction as anticipated grief. He associated such emotional turmoil with the loss of a cancer patient or a person killed in a war. The actual physical loss is delayed to such an extent that it is perceived less strongly once it occurs. In the case of a dementia patient, it is not the anticipation of death but the progressive disappearance that triggers such feelings. Even slight deviations in behavior can result in missing the healthy person we still visualize in our minds. Sharing one's pain and grief feels almost impossible, as most people without experience struggle to empathize with such an exceptional situation. For the most part, they see that the Dementia patient is still alive, not understanding that instead of awaiting the arrival of a painful reality, we already live in it. They are incapable of establishing a connection between mourning and the apparent reality.

Loss Of Memory: The most challenging moment might not be the actual death, but the patient no longer realizing who we are. Memories are the building blocks of our narrative; our autobiography. They enable us to recognize a necessary golden thread within our existence. Furthermore, they connect us to other people and create a shared reality. A warehouse of emotional souvenirs, if you will. Even though those affected are aware of the certainty with which such a situation will occur, they still perceive it as immense trauma. It seems impossible that those cherished moments of laughter and tears are suddenly worthless. Shortly afterward, linguistic abilities fail. Once adjectives and descriptions no longer suffice to express love and care, frustration goes through the roof. Time spent together turns into a farewell without anyone leaving, causing severe mental disconnection. It seems given that the death of a person means their psychological and physical disappearance. Yet here they are, sitting right in front of us. They are breathing, and their heart is beating. Mourning someone whose shell is still existing is incredibly difficult. These characteristics of dementia complicate the grieving process.

How to handle dementia grief?

There is no right or wrong answer on how to handle grief. Habits and things that help us cope vary significantly with each individual, as long as we allow ourselves to get carried away by what eases the pain. Whether it is a few days by the sea, reading self-help books, drawing one's feelings, or writing about them. One should not allow the media or society to influence what we perceive as appropriate ways to grieve. There are no fixed timeframes or designated ways to deal with this challenge. Putting pressure on oneself and buying into societal expectations can cause stigma and isolation, feelings which in turn positively affect depression and anxiety.

Self-help groups: Due to the specific nature of dementia grief, affected people often feel misunderstood. The compassion of our loved ones only suffices so much. Therefore, it can be helpful to branch out of your circle and find people that validate your experience. A self-help group is a great place to get to know others whose families are affected by Dementia and see how they are coping.

Relaxation: Meditation, massages, and yoga help slow down and be present. We feel less depressed about the good old times we miss so dearly and less nervous about the possible challenges and losses lying ahead of us. Relaxation helps us accept the actuality of what we are experiencing, allowing us to handle upcoming events better.

Periodic breaks: Relatives and friends of dementia patients often have tremendous problems with switching off their thoughts. Everything and everyone seems to remind us of the illness. It haunts our minds and tears every nerve. In addition, caregiving is an enormous burden because feelings of guilt and helplessness disable most people from asking for help. But it is an impossible undertaking for a single person that could jeopardize our health long-term. It is of utmost importance that we learn to ask for help, to take a step back from the situation regularly, whether it is a day off or a vacation. Our bodies and souls need that relief to stay healthy and be present with the Dementia patient.

Positive memories: Even if the person you love seems to fade away, it can be wholesome to enjoy time together. If the ill person is still able to speak, sort out conflicts and unresolved questions while you reminisce together. During the advanced stages, joint activities such as listening to music, laughing, or exercising can convey a sense of normality. It is this normality that sustains you during a painful farewell.

The disease process of dementia is not predictable. Therefore, the grief of bereaved relatives and friends is equally erratic. Some days feel like Armageddon, while others make you feel ecstatic when the personality of the sick person shines through. However, none of these conditions are stable. Therefore, it is crucial to reflect on the situation and your feelings. The more you understand about Dementia, the better you can accept sudden changes and tackle future challenges. Instead of endlessly grieving, we gain the power to make use of the time remaining with our beloved grandmother, uncle, or mother.