A 73 years old woman, one of our patients, affected from Alzheimer’s disease since 2001, had an epileptic fit in the morning, a couple of hours after waking up. Her family called us and we went immediately to visit her at home, and while waiting for the ambulance we tried to calm down the family. 

Francesco Carelli, Professor of Clinical Medicine and Elective courses in Family Medicine, University of Milan,

Silvia Marchesi, MD intern,University of Milan

Erika Bresciani, MD intern for family medicine, University of Milan

 

The patient lived with her two sons, one of which affected from schizophrenia. 

She presented the first symptoms of a cognitive decline in 2001, when lack of memory and apraxia appeared, then worsening in 2002 after a pulmonary resection for the presence of an abscess, after suffering from inhalation pneumonia. After this hospitalization she did not return to work, and left her job permanently.

Alzheimer’s disease was diagnosed in 2007. This diagnosis was based on clinical criteria, neuroradiological exams (TC, RMN, PET and EEG) and neuropsychological tests.

In 2005 the presence of depressive symptoms and anxiety disorder was found. 

Currently the patience is dysphasic, apraxic and disoriented in time and space.

She needs constant assistance and is supported by a caregiver. She has a personal caregiver all day and other two people that help the family with housekeeping.

The patient is treated with anticholinesterase inhibitor donepezil and with memantine, in addition to serotoninergic therapy and benzodiazepines for the depressive syndrome. She also takes folic acid, vitamin B12 and vitamin E. Before this treatment was established, she underwent some clinical investigations: routine blood tests, thyroid function tests, cobalamine and folates, which were normal.

Alzheimer’s disease (AD) is the most common form of dementia among older people.

AD course is usually slow.

The first symptoms are lack of memory and reduction in ability to carry out simple tasks. Memory loss that is associated with Alzheimer’s disease or dementia is severe enough to interfere with activities of daily living. At first, the only symptom may be mild forgetfulness. People may be unable to remember recent events, ask the same question over and over, and become lost in familiar places. 

Over time, symptoms will most often get worse, and problems can include getting lost, repeating questions, and taking longer than normal to finish daily tasks. 

As the disease progresses, people may have trouble learning new things, recognizing family and friends, and communicating. Eventually, they need total care.

 An early, accurate diagnosis of Alzheimer’s disease helps patients and their families plan for the future. 

The course of AD is divided into four stages, with progressive patterns of cognitive and functional impairment: pre-dementia, early, moderate and advanced dementia.

The National Institute of Neurological and Communicative Disorder and Stroke (NINCDS) and the Alzheimer’s Disease and Related Disorder Associated (ADRDA) established the most commonly used criteria for diagnosis. These criteria require the presence of cognitive impairment to be confirmed by neuropsychological tests for a clinical diagnosis of probable or possible AD.    Histopathological confirmation, including a microscopic examination of brain tissue, is required for a definitive diagnosis. Eight cognitive domains are most commonly impaired in AD: memory, language, perceptual skills, attention, constructive abilities, orientation, problem solving and functional abilities.

Treatment is based on acetylcholinesterase inhibitors and memantine, an NMDA receptor antagonist.

The role of the family doctor is vital, first because he may be the only health care professional that most people see, and secondly because he is the gatekeeper to other services from which their patient may benefit.

More than 90% of dementia patients are cared only for by their general practitioners, who are decisively involved in the diagnosis, therapy and recommendation of support services.

Wood in 1980 defined the terms “disease”, “impairment”, “disability” and “handicap”. Impairment is defined as “any loss or abnormality of psychological, or anatomical structure or function”. Disability is “any restriction or lack of ability to perform an activity in a manner or within the range considered normal for a human being”. We can, finally, defined handicap as “the disadvantage for a given individual arising out of impairment or disability that limits or prevents the fulfilment of a role that is normal for that individual”.    

Most of the time, the family doctor concentrates on the disease, but can  look at a person’s problem at different levels, and see patients both in terms of their disease and their environment.

Patients’ family and caregivers occupy a big place in their environment, especially if the disability of the patient prevent him from being self-sufficient, or when the patient can’t speak or express correctly his feelings and problems.

In the case described, the patient is aphasic and it’s very difficult understand her conditions. 

Seeing family and talking with relatives is fundamental for the family doctor in order to provide the best care to the patient. The family, and the caregivers, know a lot of things that the doctor can’t investigate with a simple examination. They know, for example, what and how much the patient eats, how many hours he sleeps, whether or not he has some moments of clarity.  Relatives and caregivers are also well informed about all the changes in humour and behaviour.

This is the first reason for which the relationship between the family doctor and the family is very important.

Moreover, maintaining a patient at home is a heavy burden to manage for close relatives because of the organizational, financial issues and above all the risk of psychological burnout; this risk is higher with a patient with dementia. 

For the relatives and the caregivers family doctor ‘s aid is very important.

The literature shows us that psychological assistance is useful for every person that take care of a chronic ill, and even more in case of dementia. Of course a family doctor can’t provide a psychological support for all of his patients, but can establish a trust relationship with patient’s entourage.

The continuous assistance by a health professional can calm down the anxious relatives and can also improve the distress coming to the management of the patient at home. 

In the case described, a scheme of assistance was been set up.

Once a week one of the sons of the patient comes at the surgery to take the medicaments’ prescriptions. In this way he can easily speak with the family doctor and ask questions if something is not clear. In this way it is possible to create a trust relationship between relatives and health professional. 

Once a week the family doctor performs a home visit to speak with caregivers and relatives. The home visit is necessary when the patient’s disability prevent him to move, and in this case it’s fundamental to create a strong connection with the patient’s environment. 

This close connexion helps both caregivers and family to forestall stress and decrease the risk of burnout.

The functioning of this scheme is demonstrated by the fact that the family quickly warned the family doctor when the patient had got worse. That shows a high expectation and a confident relationship. 

Nonetheless, it is important to not forget that caregivers and every member of the family that have a close relationship with the patient, need psychological support by a specialist. A good relationship with the family doctor is the first step to reach an optimal management and to break down the risk of family and caregivers’ resources’ exhaustion and burnout.

Bibliography

Donath C., Grassel E., Grossfeld-Schmitz M.  Effect of general practitioner training and family support services on the care of home-dwelling dementia patients. Results of a controlled cluster-randomized study  BMC Health Serv Res. 2010 Nov 18;10:314

Schoenmakers B., Buntinx F., Delepeleire J. What is the role of general practitioner towards the family caregiver of a community-dwelling demented relative? A systematic literature review  Scand J Prim Health Care. 2009;27(1):31-40

Brodaty H., Green A. Who cares for the carer? The often forgotten patient  Aust Fam Physician. 2002 Sep;31(9):833-6

O’Connor C.  Caring for dementia carers: the role of general practitioners in Ireland  Ir J Med Sci. 2011 Jun;180(2):327-32. Epub 2011 Jan 29

Cohen CA. Caregivers for people with dementia. What is the family physician’s role? Can Fam Physician. 2000 Feb;46:376-80

Cohen CA., Pringle D., LeDuc L. Dementia caregiving: the role of the primary care physician. Can J Neurol Sci. 2001 Feb;28 Suppl 1:S72-6