Dementia walks the sacred halls of the world’s cathedrals, among the vast wealth of Wall Street, and among the hovels of the poorest of our world. Slowly creeping where it is not bidden, getting a grip in the minds of the great, dementia marches relentlessly on and will not be deterred from its aimless end. No weapon has ever been formed against it successfully; there is no slowing its insistence upon devouring the mental faculties of both the very intelligent and the very ignorant. It destroys relationships, careers, educations, families, even the ability to appreciate the very simple pleasures of life (chocolate, grandkids, and flowers). No matter how devastating dementia is to all involved, no matter how degrading it is to each victim, and no matter how sure death is to the one diagnosed, each victim remains the creation of God, the child of its maker, and the love of his/her family.
With 58 % (33 of 57) of my case load involving some form of dementia (Alzheimer’s, CVA, Parkinson’s, non-specific Dementia) as their primary cause of pending death and another 19 % (11 of 57) with non-specific Debility as their primary cause of death who are also suffering from varying levels of dementia, dementia has been on my mind a whole lot this summer. Further, and even more importantly, I must ask the difficult questions. First, how does one effectively minister to people with dementia? Second, how does one draw the family back into the relationship without hurting them or creating a further schism between the demented and the family?
“People rarely lose interest in things they have enjoyed throughout their lives simply because they are experiencing declines in mental function. If their activities can be modified and simplified to meet their changing abilities, they can continue to enjoy things that caused them pleasure in the past and so retain an important aspect of their identities.”
Jennifer Hay, Alzheimer’s and Dementia (People’s Medical Society)
While these words were not written for the clergy, I think they have great wisdom that provides guidelines for those ministering to those with dementia. Further, they demonstrate the need for a good initial assessment of the client and the client’s family. Through a series of informal interviews and research into the client’s life, it is often easy for clergy to determine what was/is important to the client and what has caused them pleasure. Hay also goes on to use the example that clients to whom music was important can continue to find pleasure in music, even though dementia has taken its toll. Many people have found prayer, Scriptures, and sacred hymns to provide immense pleasure, comfort, and peace throughout their lives. The chaplain of the demented can easily provide these simple pleasures/tasks routinely to their clients with little difficulty. It has even been true in many cases, when the source of one’s pleasure is ‘unknown,’ it can be determined even in the non-verbal through experimentation. It amazes and thrills me to pull my phone from my pocket (doubles as an mp3 player), play an old hymn like “Amazing Grace,” and watch the same non-verbal client’s mouth drop open, occasionally see a tear make its way through the wrinkles of his aged face, or the demented Pentecostal raise her hands and shout in a feeble voice, “Hallelujah!” I have even watched non-verbal, non-responsive clients mouth the 23rd Psalm and/or the “Lord’s Prayer” in the final moments of their lives. All this and more can, and usually does, thrill the families of the demented client.
The next question, “How does one draw the family back into the relationship without hurting them or creating a further schism between the demented and the family?” is not so easily answered, due to the multiplicity of human nature. What will help one family rarely will be the same answer for the next family. I call them the wall huggers, and there are at least a few by every deathbed. In some cases the entire family are wall huggers. I arrive at the room and they are hugging the walls, or maybe propping them up (sometimes it is hard to tell), and nobody is by the bed. Consequently the client dies alone, even though the ones that love them most are only a few feet away. I have found that direct request rarely works (“Why don’t you take the hand of your mother?”). Appealing to the altruistic natures of the family usually only works occasionally, and generally only briefly, by making the family feel guilty. The most successful thing I have done is through example. This, however, takes time, which is a valuable commodity that is often unavailable.
The example that I try to set is as follows. The main thing I try to do when entering the room is to make contact with the client through touch and voice. First, getting close to the client, so they are aware on some level that there is an additional person with them, is important for many because they often cannot see well. Second, I think making physical contact through holding hands or touching the face adds an addition point of contact and closeness. Third, voice contact through often one-sided conversation, provides addition bonding. Types of voice contact can be as simple as a description of how the day is going to devotional or scriptural readings. A fourth type of contact that is difficult for many, but one in which I find great pleasure, is stepping for a while into their alternate reality (chasing butterflies in an imaginary park, catching the ‘biggest’ fish, truck driving cross-country, or watching the bears play on the steps of the church across the street). If time will allow, family will usually follow the example that is set for them by people who, they figure, know how to deal with the demented. I often demonstrate to families the value of sacred hymns and the reading of favorite Bible passages. It is also from the above posture that I can quote/read Scripture, play or sing sacred hymns, and/or offer individualized, personal prayers. Unfortunately time is an enemy, and there have been many times that the most I could accomplish was to briefly provide the above before the client stepped across the divide, with no time for the family to release the wall and join me and the client by the bed.
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