Editor's Note: This is the last of three articles in a series concerning the phenomenon known as "dementia grief". Loved ones of dementia sufferers have to cope with two deaths – a significant loss of the person while living and a final physical death. The first article in this series dealt with what makes dementia grief different that typical mourning; the second article discussed the psychological states that family members encounter. This final article addresses the grieving process as experienced through the three stages of dementia. The author of this series of articles, Dr. Kesstan Blandin, has worked with people suffering from dementia and their family members. -wnt

It is generally recognized that the person with Alzheimer's travels through three major stages: early, moderate or middle, and late or severe. There are not clear boundaries of one stage to the next, which brings up the now familiar ambiguity and liminality of dementia. What is clear is that the entire process of living with Alzheimer's in a loved one and each stage is a process of loss, and thus, of grief. As discussed in the previous essay, the receding of the known self is the core experience of dementia grief. Each stage has its own expression of the dementia grief process, i.e., experiences of acknowledging loss, of ambiguity, and re-emergence.

Early Stage

Often before overt memory or word problems, Alzheimer's disease presents in depression, apathy, and withdrawal from conversations and activities. It is commonly thought that the beginning of living with Alzheimer's disease is when the person receives a diagnosis from their doctor, but families will tell you this journey often begins long before the actual diagnosis. Due to subtle entry of dementia into a family, sometimes the diagnosis is a relief: at least now there is a name for it. The diagnosis can be a clarifying moment counteracting years of a niggling ambiguity in the backs of the mind of the person with Alzheimer's and their family members.

The early stage of dementia involves profound grief; this may sound surprising. Nonetheless, profound loss and separation from one's previous life and anticipated future occurs in the early stage. In the early stage, the person with dementia still retains a high level of function, particularly in social realms. For this reason, friends, family, and people outside the home may not understand the alarm family members feel in response to the small but significant losses they are witnessing. Often, well meaning friends will attempt to reframe a family member's expression of fear or grief by reminding them that the person with dementia is still independent, appearing to be doing well, and to enjoy the time one has now. People mean well, but family members may feel shamed for their normal feelings of grief and loss. The fact is, the earliest symptoms of Alzheimer's very often manifest predominantly in the privacy of the home. The family, especially spouses of the person with dementia, will report feeling that only they really know the gravity of what is happening. The lack of validation in the community is a form of disenfranchised grief and for this reason family members may not recognize their losses or grief.

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Another common occurrence in the early stage of the disease is the tendency of the family members, and again, especially spousal caregivers, to be overwhelmed by the entirety of the disease that a diagnosis represents. In essence, they swallow the magnitude of the entire disease all at once, creating a sense of drowning in doom, anxiety, and ambiguity about the future. The unknown future represents the liminal aspect of the early stage experience: what will happen, when, and what do I do? Education and planning counteracts the ambiguity of the early stage. Educating one's self on the disease and learning new skills to manage symptoms are practical adaptations to the losses of the early stage.

Middle Stage

The middle stage is often considered the most difficult in terms of the losses and the increasing responsibilities. Indeed, this stage involves some of the most compounded and profound losses, yet offers the least amount of time or room to process one's grief. Here is where establishing a community of support, opportunities for respite, self-nurturing routines, and a family plan can provide immense support and peace of mind.

The core of ambiguity in dementia grief resides in the middle stage with the receding of the known self, and when a sense of separation from the person reaches its apex. It is not uncommon for the person with dementia to succumb to periods of great confusion, anxiety, or depression as they progressively lose cognitive capacity and memories. Even feeding and mealtimes can be problematic. At times, the person with dementia may seem to no longer be the person they once were. Of course, they are the same person, now living with a brain disease. The sometimes confusing or odd behavior of a person with Alzheimer's makes sense if we remember that these are responses to having a brain disease.

People with Alzheimer's are increasingly unable to make sense of this world, but they are in a world and it is our obligation, burden, and act of love to meet them in this otherworld. As the mind breaks down, irrationality becomes more dominant. In the moderate stages of the disease, people with dementia often undergo a great struggle as the world within them swallows the world around them. But remember, they always attempt to make sense of what is happening to them.

Cultivating the ability to simply be present without judgment is a powerful adaptive tool to counteract ambiguity, enabling one to connect emotionally with the person with Alzheimer's as they progressively change in response to their disease.

Late Stage

It is in the late stage of dementia that family members experience true anticipatory grief. In this period, the person with Alzheimer's can be severely limited in their communication, comprehension, and movement, and families report struggling to stay connected to their loved one.

There are many aspects and layers to the self, but we typically focus almost all of our attention on connecting rationally through language. Our dependence on that form of connection begins to break down earlier than many anticipate in living with dementia in a loved one. It can be very helpful to practice engaging other levels of the person with Alzheimer's, outside of language, such as paying attention to what is communicated through tone of voice, body language, arranging calming environments, music, touch, smells, and affection. There is always a self that remains, and this self is always and only in the present moment. It is important to cultivate the capacity to be present through a form of mindfulness and engaging in support groups.

The liminal state in the late stage is typically around issues of end-of-life: what will happen, how can I make sure the person with dementia is not in pain? Counteract this ambiguity through education on end-of-life issues. Make legal and financial decisions early on. Advanced directives dictate the person's wishes for end-of-life and can be valuable guides at this time. Once plans and education is in place, the family can then focus on their love of the person with dementia, acceptance that the disease has taken its course and will soon be over. Often, families report feeling relief at physical death, inner peace with knowing that they have done their best, and that their loved one is free of suffering. Now, the family can mourn, heal, and re-emerge into their new life with cherished memories.

Read the first two articles in this series for a complete understanding of dementia grief:

Part 1 – What Makes It Unique?

Part 2 – What Are The Process States?