On the way to Hazyview – the journey with Alzheimer’s diseaseCLF
Alzheimer’s disease (or Alzheimer’s dementia) accounts for the highest incident rate of dementia conditions prevailing internationally.i South Africa is no exception. Treatment of the disease is not a high priority, especially in many rural communities. The number of actual diagnosed cases of Alzheimer’s disease in South Africa is probably much higher than generally assumed.ii
Alzheimer’s as a condition of dementia – a definition and diagnosis
Alois Alzheimer was the first researcher who in 1906 recorded the syndrome Alzheimer’s disease as a distinctive progressive disease process. He published his findings for the first time in 1907 and later also in 1911 in revised format. Despite his historical publications the disease did not really get serious attention for nearly half a century. Medical researchers merely regarded the syndrome as a “pre-senile” condition that differed from other “senilities” because it is specifically applicable to the higher age group. This happened despite the fact that Alzheimer pointed out in his description that Alzheimer’s disease could manifest itself also at an earlier age.iii A-typical Alzheimer’s conditions exist, which may occur in individuals as early as in their forties or fifties. It is described as an “early-onset” of Alzheimer’s disease.iv
Progress of the disease
Together with general dementia symptoms (like forgetfulness, language and speech disorders, mood swings, restriction of judgement and loss of independent decision making and initiative, functional loss like handling personal finances and personal hygiene), the progress of Alzheimer’s disease is characterised by the build-up of protein clusters in the brain (called “plaque” or “tangles”). A shortage of chemicals develops that prevents neurotransmitters from functioning successfully. Nerve cells in the brain start to die off and brain tissue decays.v This progressive condition is incurable and irreversible and the average progress of the disease is approximately 12 years.vi
Areas in the brain affected by Alzheimer’s disease are the cerebral cortex (language and information processing) and the hippocampus (forming of new memory). Thus, a person with Alzheimer’s disease may elicit incidents from the distant past, but recent events cannot be elicited because new memory did not form.vii
For the sake of a relative good quality of life for the patient with Alzheimer’s disease, as well as the heavy burden that caring puts on the caregiver, it is extremely important that a person with apparent dementia symptoms be professionally diagnosed by a medical specialist such as a neurologist or psychiatrist. Self-diagnosis, founded on general observation, is a great disadvantage to the person with the disease as well as the caregiver. Although the disease is incurable and irreversible, there is nevertheless medication that specialists can prescribe.
This treatment retards the progress of the disease and makes life and caring so much easier.
Regular monitoring of the disease’s progress is of great importance. Follow-up visits to the neurologist also assist the caregiver in knowing exactly to what stage the disease has progressed and necessary adaptation for caring can be made.
The person with Alzheimer’s dementia (Alzheimer’s disease)
A very accurate definition of Alzheimer’s disease as a condition of dementia is naturally of great importance to the doctors who are involved with the patient. Likewise, the character of the progression and the conduct of the patient are of great importance to the caregiver. Of even greater importance is to remember that we are dealing with a person. Family should not get so entangled in complicated definitions and the uncertainties of the disease that they overlook the person with the disease.
The person with Alzheimer’s dementia should therefore always be approached with respect. This person, despite apparent deviant conduct, is still a complete human being. Especially in the early phases of the disease, the person is fully aware of the disease and lives with his/her own fears, needs, appreciation and longing for family and friends. The person lives fully, but in an own mysterious world that could be described as “Hazyview”.vi
Practical thoughts for the carer
- It is of great value, especially for the spousal caregiver, to have an agreement with the patient to speak openly about the disease.
- Alzheimer’s dementia is a journey of much loss of independence. Skills such as driving a vehicle should be suspended due to the risks involved. The National Traffic Act of 1996 makes it compulsory for doctors when the MMSE (Mini-Mental State Examination) drops below a count of 20/30, to report the position to the traffic authorities.ix
- Just as in the case of driving a vehicle, it is safest to store firearms out of reach of the person with Alzheimer’s dementia.
- The caregiver (in particular the spousal caregiver) has the difficult and emotional task to protect the patient against household dangers such as: hot kettles and stoves, hot bath water and the handling of household items such as sharp objects which could hurt the person.
- This implies that dangerous tasks are increasingly taken over by the caregiver him- or herself. The patient becomes more and more dependent on the caregiver.
- It is less known in research and in practice that the person with Alzheimer’s disease retains certain abilities till late in the progress of the condition.x Rhythm, music and symbolism are still understood and enjoyed. It has therapeutic value to use known music and songs as stimulation.
- For the sake of the caregiver’s own psychological well-being, it is strongly recommended that the caregiver should join a support group for caregivers.
Alzheimer’s disease and faith
The understanding of symbolism means that the person can still associate the custom of bread and juice with communion and the strengthening of faith. Faith is a gift of God (Eph. 2:8). Nothing can take it away from the person with Alzheimer’s dementia. The baptism gives the believer the assurance that even when a person forgets who God is, this person is engraved in the memory of God. The person with Alzheimer’s disease may live in this hope.
Dr Petrus Moolman
i The Specialist Forum. 2016. Alzheimer’s Disease: Looming epidemic. 16(1):33
ii Benade, S. 2012. Support services for people suffering from dementia in rural areas of Kwa-Zulu Natal, South Africa. Dementia 11(2) 275 – 277
iii Mandell, A.M. & Green, R.C. 2011. Alzheimer’s Disease. (In Budson, A.E. & Kowall. N.W. eds. The Handbook of Alzheimer’s Disease and Other Dementias. Chichester, West Sussex: Wiley-Blackwell. p. 3 – 91). p. 4.
iv Alzheimer’s Society UK. 2014. What is Alzheimer’s disease? [Real time]. Available: www.alzheimers.org.uk [ May 31, 2019]. p.4
v Alzheimer’s Society UK. 2014. What is Alzheimer’s disease? [Real time]. Available: www.alzheimers.org.uk [May 31, 2019]. p.1
vi Potocnik, F.C.W. 2013. Dementia. SA JOURNAL OF PSYCHIATRY (SAJP) 19(3): 141
vii Steenkamp, V. 2015. Alzheimer’s disease – Old friends and new promises. [Real time]. Available:
http://www.up.ac.za/en/school-of-health-care-sciences/news/post_2125569-alzheimers-disease-old-friends-and-new-promises [February 11, 2017].
viii Moolman, P.L. 2019. Meaningful Ageing. Pretoria: Groep 7 Drukkers en Uitgewers. p. 62 – 63
ix Potocnik, F.C.W. Dementia. 2013. SA JOURNAL OF PSYCHIATRY (SAJP) 19(3): 144
x Moolman, P.L. 2017. Holistic, Motivational Life Management in Ageing: A Gerontological-Pastoral Approach. Mafikeng: North-West University. (Thesis PhD). p148; Matthews, M. 2015. Dementia and the Power of Music Therapy. Bioethics, 29(8): 573 – 579; Stuckey, J.C. 2003. The Divine is Not Absent in Alzheimer’s Disease. (In Kimble, M. A. & McFadden, S.H. eds. Aging, Spirituality, and Religion: a handbook (Volume 2). Minneapolis: Fortress. p. 74 – 80); Swinton, J. 2012:194 – 197.