Thursday, September 27, 2012

Alzheimer's caregiver techniques


world alzheimers day 2012

Caregivers living with persons having Alzheimer's Disease face specific problem behaviours. These behavioural problems result from memory loss that is the hallmark symptom of Alzheimer's. We have previously discussed resources giving hope for dementia caregivers. Caregiver do's and dont's for mental illnesses in general have also been highlighted. Living with Alzheimer's Disease is the theme for World Alzheimer's Day 2012. In this post we specify methods to help caregivers living with persons having Alzheimer's handle problems related to memory loss and reduce the burden of  care at home.

Caregiver techniques for Alzheimer's

  1. Regular routine enables basic activities of daily living for a longer period of time. Make a visual time-table and regularly remind the person with Alzheimers to consult it so it becomes a habit.
  2. Keep large clocks in each room and remind them of the time at every opportunity.
  3. A personalised calendar with large figures helps plan and anticipate potentially confusing events such as a festival or travel.
  4. A room with a window is great for orientation. Natural daylight and dark phases maintain the sleep-wake cycle.
  5. Greet at every new meeting with date and time. The date is particularly difficult for a person with Alzheimer's to learn - it changes every day -  hence the disorientation. Repetition will keep the person with Alzheimers disease current with the month and year for longer.
  6. Keep familiar objects like photos, phone, books, and decorative pieces in the same place. People with Alzheimer's often have to move from one set of caregivers to another. Placing these objects in the same general positions helps them to avoid confusion and  anxiety.
  7. Photographs are important visual memory pegs. Two or three frames with photographs of the caregiver families and old friends reassures the person with Alzheimer's disease and facilitates their smooth transition between caregivers.
  8. An identity card is essential for every person with  Alzheimer's. It must contain an address and an emergency contact number. It should be worn at all times, even inside the  house. Your loved one can wander out of an open door and not  be able to find her way back. Reinforce and rehearse showing or consulting the identity card on being asked for address or phone number.
  9. Encourage and let them do the  things they can. Don't take over every activity or your caregiver burden will increase. Prompt them when they hesitate or take time. Help them in those activities they are unable to do.
Anti-dementia drugs delay nursing home admissions for upto a year. To make home this stay meaningful and to reduce the burden of care these methods need to be used by caregivers living with Alzheimer's Disease patients.

Friday, August 31, 2012

Alzheimers disease - mild cognitive impairment countdown

alzheimers timeline

Alzheimers dementia is usually diagnosed when memory loss and behavioural symptoms are readily apparent to their caregivers. At this stage the primary concern is to slow further deterioration. Caregivers at the clinic have often wished they could have looked into the future. Many have a history of Alzheimers disease in their elderly and wondered whether there was an earlier way of knowing. New knowledge gives us hope in this direction.

Alzheimers disease before memory loss

We now have the beginnings of a time line in the countdown to dementia. It is now possible to trace the beginnings of Alzheimers Dementia up to 20 years before its manifestation with memory loss and impaired function.

20

Beta-amyloid levels in the cerebrospinal fluid (CSF)  begin to drop 20 years before the onset of dementia. Alzheimer's Disease is characterized by toxic deposition of specific beta-amyloid (Aβ1-42) plaques around the brain cells. In normal aging beta-amyloid continues to increase in the brain fluid. However, in Alzheimers Dementia brain fluid beta-amyloid is markedly reduced.This is due to reduce clearance of beta-amyloid from the brain to the blood and CSF, as well as increased beta-amyloid plaque deposition in the brain.

15

15 years before dementia onset, beta-amyloid deposits can be detected by amyloid imaging PET scans. The best known amyloid PET tracer is Pittsburgh Compound-B (PIB). PIB retention is found in over 90% clinically diagnosed AD patients.
Tau protein accumulation inside the brain cells (neurons) is the second hallmark of Alzheimer's disease.  Microtuble associated protein tau (MAPT) in the brain fluid (CSF) increases with age. In Alzheimer's disease tau levels are markedly increased and reflects damage to the neurons and axons (brain cells). High CSF tau level differentiates mild cognitive impairment (MCI) from that which progresses to Alzheimer's disease.
Shrinkage or atrophy of the brain becomes detectable by MRI. This atrophy is visible in brain structures that are essential for the conscious memory of facts and events. These areas are located in the brain’s medial temporal lobe. This shrinkage is apparent on using a visual rating system which also measures its severity. The more extensive the brain atrophy, the more advanced the clinical stage of Alzheimer’s disease.

10

PET Scan (FDG-PET) changes in the way the brain uses glucose are apparent 10 years before dementia. These PET scan changes correlate with progression of Alzheimers disease.
Episodic memory loss begins at this stage. Episodic memory loss is the inability to learn new information or to recall previously learned information. It manifests as forgetting of recent events and conversations, repetitive questions, repetitive retelling of stories, forgetting the date, forgetting appointments, misplacing objects, losing valuables, and forgetting that food is cooking on the stove. The formation of new episodic memories requires intact medial temporal lobes of the brain; these are progressively destroyed in Alzheimers disease.

5

Mild cognitive impairment (MCI) deveelops 5 years before dementia. People with mild cognitive impairment have problems with thinking and memory loss. Mild cognitive impairment does not interfere with everyday activities. Persons with mild cognitive impairment are often aware of their forgetfulness.
Preventive therapies for Alzheimers disease (AD) require the development of biomarkers that are sensitive to subtle brain changes occurring in the preclinical stage of the disease. Early diagnostics is necessary to identify and treat at risk individuals before irreversible neuronal loss occurs.
Sources
  1. Bateman R. The dominantly inherited Alzheimer's network trials: an opportunity to prevent Alzheimer's disease. Program and abstracts of the Alzheimer's Association International Conference 2012; July 14-19, 2012; Vancouver, British Columbia, Canada. Featured research session F3-04
  2. Christian Humpel. Identifying and validating biomarkers for Alzheimer's disease. Trends Biotechnol. 2011 January; 29(1): 26–32. doi: 10.1016/j.tibtech.2010.09.007
  3. Duara R, Loewenstein DA, Potter E, Appel J, Greig MT, Urs R, Shen Q, Raj A, Small B, Barker W, Schofield E, Wu Y, Potter H. Medial temporal lobe atrophy on MRI scans and the diagnosis of Alzheimer disease. Neurology. 2008 Dec 9;71(24):1986-92.
  4. Mosconi L, Berti V, Glodzik L, Pupi A, De Santi S, de Leon MJ. Pre-clinical detection of Alzheimers disease using FDG-PET, with or without amyloid imaging. J Alzheimers Dis. 2010;20(3):843-54.

Sunday, December 11, 2011

Hope for dementia caregivers - ARDSI Conference Pune 2011

dementia caregivers training

Training for caregivers of persons with Alzheimer's disease helps address the distressing behaviours that arise in the affected person. Caregiver training also promotes wellness in caregivers by giving them the skills to  handle the relentless stress. Unfortunately most caregivers are unaware of the need or the availability of resources. The Alzheimer’s and Related Disorders Society of India (ARDSI) held its 16th conference in Nov 2011 at Pune. This significant event marked Pune’s arrival on the national dementia caregiver stage. Pune is now the 16th Indian city with an ARDSI chapter of its own. How does this help people with dementia (PwD) and their caregivers? The ARDSI Pune chapter “develops, coordinates and renders services in the field of dementia care, support, and training”.

The training aspect is particularly interesting. Conversations with caregivers at the clinic usually swing around to the day-to-day nitty-gritty of dealing with dementia, the impaired activities of daily living (ADLs) - keeping the person engaged, getting them to bathe, preventing them from wandering. Members of other fully functioning chapters whom I met at the conference animatedly discussed the caregiver training workshops and courses they held on a regular basis. These local courses are exactly what the doctor ordered - education for understanding and hands-on caregiver training.

The Dementia India Report 2010 was extensively quoted by many of the conference speakers. This document has dementia related statistics specifically for India and its states, and is an essential resource to leverage for obtain funds for dementia related activities. It also has details of services available for people with dementia - unfortunately data on support groups is as yet not available.

Caregiver training is a thrust area in dementia management. The 10/66 Dementia Research Group has developed a training package with a set of manuals, detailed instructions and a training video for caregivers and caregiver training. These are available for anyone to download after providing an email id. They provide a template that can be used by any individual or organisation involved in caring for persons with dementia.

The ARDSI conducts two geriatric care training courses; a six month certificate course and a one year post-graduate diploma course at its centre in Cochin. The number of persons with dementia in India is assessed to be 3.7 million in 2010. The ARDSI and similar courses will provide a pool of trained workers to care for the needs of people with dementia and their caregivers. This pool of personnel is not just on paper. The conference was over-booked. Extra seating had to be provided to accommodate the 100+ last minute attendees in the 400 seater main auditorium. Most of them were trainee social workers entering the field in time to meet the growing demand for their services.

References
  1. 10/66 Dementia Research Group. Resources for caregivers and caregiver trainers
  2. Alzheimer’s and Related Disorders Society of India (2010). The Dementia India Report: prevalence, impact, costs and services for Dementia. (Eds) Shaji KS, Jotheeswaran AT, Girish N, Srikala Bharath, Amit Dias, Meera Pattabiraman and Mathew Varghese. ARDSI, New Delhi. ISBN: 978-81-920341-0-2 

Thursday, September 15, 2011

Diagnosing Alzheimer's Dementia

Alzheimer's Disease amyloid plaques and neuro-fibrillay tangles in brain tissue
Microscopic picture of the brain showing amyloid plaques and
 neurofibrillary tangles first seen by Alois Alzheimer in 1907

The diagnosis of Alzheimer's disease became headline news when the defence counsel of a prominent citizen of  Pune stated they were awaiting results of his brain MRI to finalise the diagnosis of dementia. Recently a patient's medication was stopped when his neuro-physician declared there were 'no plaques on MRI so it is not a case of Alzheimers'. The caregivers returned to me when his behaviour problems recurred.

Dementia including that of the Alzheimer's type is a clinical diagnosis (Grand 2011). Dementia is characterised by a triad of
  1. Progressive deterioration of mental processes (cognitive abilities)
  2. Behavioural and psychological symptoms of dementia (BPSD)
  3. Difficulties carrying out day-to-day activities (activities of daily living or ADL).  
Alzheimer's Disease is commonest dementia after 65 years of age Alzheimer's dementia has an insidious onset, and progresses gradually and inexorably. This natural course is a key differentiator Alzheimer's from other forms of dementia. Dementia is suspected when a caregiver of an elderly person, or sometimes a person with a family history of dementia, becomes concerned about problems with memory. The diagnosis is purely clinical. No laboratory test or imaging (including MRI) is required to diagnose Alzheimer's disease. These investigations can only help differentiate the other forms of dementia when those are suspected.

Memory problems are a core feature of the disease. These manifest as
  • Difficulty recalling details of recent events (forgets he has already dropped his grandchild to school), personal conversations, or specific elements of a task she is performing (eg, preparing a meal)
  • Asking the same question multiple times while denying repeated questioning
  • Tendency to make up events to fill memory gaps and to give inaccurate responses to questions (what he had for breakfast)
Other common cognitive concerns that could indicate dementia of the Alzheimer or any other type
  • Disoreintation to time and place. As the illness progresses orientation worsens to include problems identifying familiar places, family members, or other well known people.
  • Difficulties with activities of daily living (ADL). Problems with dressing or using common utensils
  • Language impairments resulting in decreased conversational output, word-finding difficulties, and limited vocabulary.
  • Visuo-spatial dysfunction manifest as impaired driving ability, and getting lost
  • Problems with mathematical calculations impair ability to use money and balance finances.
  • Impaired judgement in novel situations (difficulty planning a vacation).
Behavioural and psychological symptoms (BPSD)
  • Depression occurs in up to 50% of individuals with Alzheimer's Dementia, and may be attributed to awareness of cognitive changes
  • Lack of feeling or emotion (apathy) is associated with significant caregiver distress
  • Psychosis generally occurs later in the disease course. Delusions are predominantly paranoid in nature, with fears of personal harm or mistreatment, theft of personal property (usually related to financial matters), and marital infidelity. Hallucinations are less common than delusions, and tend to be visual.
  • Other behavioural symptoms include agitation, wandering, and sleep disturbances.

Diagnosis of Alzheimer's Disease is based on 
  1. Detailed history to identify memory deficits, and other cognitive symptoms and assess their impact on the individual and family.
  2. A thorough clinical exam (mental status examination) confirms the impairments in memory and cognition, and delineates the behavioural and psychiatric symptoms that cause caregivers concern. This usually includes using validated and standardised screening pencil and paper tests. 
  3. Psychological testing confirms and quantifies the impairments across various areas of brain function (memory, language, visuo-spatial), assesses the treatment response, and documents progression of the illness with time.

Laboratory tests including MRI only differentiate Alzheimer's disease from other disorders such as subdural haematoma, brain tumour, hydrocephalus, and dementia associated with vascular disease. Magnetic Resonance Imaging (MRI) has no other clinical utility in Alzheimer's disease. These tests are not required or mandated by any classification system including that of the WHO (ICD) or the National Institute of Neurological and Communicative Disorders and Stroke and the Alzheimer’s Disease and Related Disorders Association (NINCDS-ADRDA).

Amyloid plaques, and neurofibrillary tangles are the hallmark of Alzheimer's disease and are required for a definitive diagnosis. These were first discovered by Alois Alzheimer in 1907.  His slides were rediscovered in 1992 and 1997. The rediscovered images show the classical pathological signs of the disease named after him. Amyloid plaques and neurofibrillary tangles are seen on microscopic examination of brain tissue using special staining techniques or by electron microscopy. Therefore the only way to obtain a definitive diagnosis of Alzheimer's disease is to obtain a brain tissue sample by biopsy or on autopsy. No MRI, however advanced can detect plaques.
For the purpose of treatment a probable diagnosis using bedside techniques of history and clinical examination is all that is required to diagnose Alzheimer's disease.


References
  1. Dickerson BC. Advances in quantitative magnetic resonance imaging-based biomarkers for Alzheimer disease. Alzheimers Res Ther. 2010 Jul 6;2(4):21.
  2. Graeber MB, Kösel S, Egensperger R, Banati RB, Müller U, Bise K, Hoff P, Möller HJ, Fujisawa K, Mehraein P. Rediscovery of the case described by Alois Alzheimer in 1911: historical, histological and molecular genetic analysis. Neurogenetics. 1997 May;1(1):73-80.
  3. Grand JH, Caspar S, Macdonald SW. Clinical features and multidisciplinary approaches to dementia care. J Multidiscip Healthc. 2011;4:125-47. Epub 2011 May 15.
  4. McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan EM. Clinical diagnosis of Alzheimer's disease: report of the NINCDS-ADRDA Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer's Disease. Neurology. 1984 Jul;34(7):939-44.

Friday, December 31, 2010

Caregivers of mentally ill persons - Do's and Don'ts

Caregivers of persons with chronic mental illness are usually family members, 'individuals whose own happiness is entwined with the well-being of people who are dear to them'. The burden of care is associated with significant stress. For one family the stress was unbearable. They abandoned their mentally ill daughter in a hospital. This story is repeated often enough in urban areas like Pune.

How can a caregiver help a relative with mental illness?

DOs

Follow the treatment
See to it that the person takes the prescribed dosage of medication regularly. Failure to keep to the dosage may lead to a relapse of the illness.
Watch for a relapse
A person in your care may suffer a relapse for no obvious reason. Watch out for early signs such as sleeplessness, restlessness, and irritability. Take the person immediately to a psychiatrist, so that medication may be adjusted.
Take interest and appreciate
Talk to the person. Show an interest in what he or she is doing. Appreciation of the smallest task is important. Try to prolong normal talk and conversation.
Assign small responsibilities
Get the person to perform simple tasks around the house. Keep these tasks small and uncomplicated.
Supervise
The need for supervision varies.
  • Constant supervision: Persons who are chronically ill or who express suicidal thoughts and seem very depressed.
  • Periodical supervision: To ensure that drugs are taken, personal hygiene is maintained and that there are no signs of depression.
  • Minimal supervision: As patients become self-sufficient they can be trusted to function alone safely.
Acceptance
The family must realise limitations and weaknesses of the person being cared for. Caregivers can minimize frustration by learning not to expect the impossible the ill relative. The patients condition will improve – but slowly.
Support services
Do utilise support services available in the community. Mental illness is included in the Persons with Disabilities Act (1995). This act has sections related to education and employment of individuals with mental illness.
Ensure some ‘ME’ Time
While caring for a loved one it is easy to neglect oneself. Stick to a routine for meals and sleep. Arrange for someone to care for the relative at least once or twice a week. Preserved health will ensure continued care for the dependent relative. Caregivers who spend some time away from their ill relatives express more satisfaction in caring for them.

DONTs

Don’t criticise
Derogatory criticism, taunting or disbelieving can have a traumatic effect on the mentally ill person who is in a very sensitive state. Arguing and harassing only adds to the stress and may lead to a return of acute symptoms.
Refrain from over-involvement
Sometimes the person being cared for may interpret interest and support as interference and meddling. In that case it is better to back off. Stand by in case of need, rather than getting involved actively.
Don’t exert social pressure
Do not try to make the person aware of social and financial responsibilities while undergoing treatment. Show that you believe in and value their efforts. As the person improves, he or she should be allowed to grow slowly into a realisation of abilities and responsibilities.

What are the factors related to caregiver satisfaction?

(Kartalova-O’Doherty and Doherty, 2010)
Finding caring services. A caring psychiatrist plays a crucial role in caregiver satisfaction.
Being accepted as a partner in caring for the ill person. Satisfied caregivers see their role as an additional source of social support for rehabilitation or recovery for their relative. They feel this role is accepted by the mental health services.
Interrelated factors
  • Supportive and non-intrusive relationships between carers and their ill relatives
  • Supportive community. A supportive community is essential to reduce stigma associated with chronic mental illness.
  • Suitable family support programmes. Caregivers are left to fend for themselves or when they give up, to leave their relatives at some soul-less 'home'.

Caregivers have a major role to play in re-socialization, vocational and social skills training of a relative with mental illness. There is a shortage of rehabilitation professionals to deliver these services in Pune. The lack of infrastructure, funds and political support for mental heath care places almost the entire burden of caring for persons with mental illness on their families (Avasthi, 2010).

  1. Avasthi A. Preserve and strengthen family to promote mental health. Indian J Psychiatry 2010;52:113-26
  2. Yulia Kartalova-O’Doherty and Donna Tedstone Doherty. Satisfied Carers of Persons With Enduring Mental Illness: Who and Why? Int J Soc Psychiatry. 2009 May; 55(3): 257–271. doi: 10.1177/0020764008093687.