Caregiver’s role in Alzheimer’s disease

Friday, 26 September 2014 12:10 - - {{hitsCtrl.values.hits}}

The patient turns to the doctor; who does the caregiver turn to?

By Fathima Riznaz Hafi Alzheimer’s disease is a degenerating illness that has no cure. Once a person has been inflicted with this illness, the memory starts to deteriorate over time, while other changes also gradually take place. Though the plight of the patient is no doubt distressful, most people fail to see the suffering of the caregiver.

The person who takes care of the patient (normally a spouse or family member) is doing a very noble and kind service to a helpless person but is often helpless himself especially when not given the right guidance as to how he should handle the patient. The mental and physical strain that is placed upon this person can become overwhelming, resulting in immense agony and frustration. Willie Mendis is Professor Emeritus at the University of Moratuwa. A very accomplished man, he is Vice Chancellor at the university and has served as Minister at embassies in USA and Canada and Chairman of the Urban Development Authority but his life has taken a huge shift to something he had never imagined – being a caregiver – something he knew nothing about until his wife was diagnosed with an illness which, again, he knew nothing about. He has been a caregiver for six years. His wife was diagnosed with Alzheimer’s disease in 2008 and since then he has been devoting a lot of his time to attending to her needs. He shared his story at the Lanka Alzheimer’s Foundation recently at an event supported by the WHO, to bring to light what it means to care for a person suffering from Alzheimer’s disease. Prof. Mendis said there are three kinds of caregivers: family, remote (not part of the family but they come and help) and spousal caregiver (and that’s him). “I’ve been married for 46 years,” said an emotional Mendis, as he paused to weep. “My wife is an only daughter, her parents passed away in 2001 and 2002 but she doesn’t remember that. She asks me about them and says she wants to visit them. She recalls happy moments in her life and she remembers being the naughtiest girl in her class. She was an outstanding homemaker, chef and an excellent caretaker of our garden.” Prof. Mendis broke into tears as he praised how well she had maintained their beautiful garden. “She lived a very active life and travelled round the world with me. Our social life continues with close friends. We have three kids; they were schooling in Sri Lanka and graduated in the US. They have all settled down,” he added. How the journey began In 2008 the couple visited their daughters in the US. During conversation her children noted that she couldn’t remember events that took place two days ago. This prompted their daughter to take her to the doctor. She met a neurologist, went through an MRI scan and blood tests. At the first diagnosis, her score was 23/30. At that point the doctors said that it was ‘most likely Alzheimer’s type’ – it was a probable illness. “Now I’m on this journey caring for my spouse,” said a teary-eyed Prof. Mendis. First he was in denial. She also thought nothing was wrong and that it was a case of short-term memory loss. Four years later, two of their daughters observed things that were not apparent to him. It didn’t hit him because he was busy with work. They went for more tests. Her score declined to 10/30 at the next diagnosis. The doctors did a thorough examination and told him she has moderate to severe dementia consistent to Alzheimer’s. They told him to start on drugs immediately – they prescribed four types of drugs. They also told him not to leave her alone and that her condition requires full-time supervision at home. Time for research He wanted to find out what this illness was. He gathered information from various sources. Though he knew nothing in the beginning, through his research he found out what having this illness means. He understood why

his wife was forgetting things. He found out that factors that can cause dementia are: diabetes, depression, physical inactivity, mid-life hypertension, stress, smoking, mid-life obesity, educational level and advanced age. He also found out that this illness had no cure and progressed over time. After extensive research he found out that it generates loss of memory and he knew the situation was getting serious. The underlying link was the brain, he said. “I soon became aware that there was a rogue protein called ‘beta-amyloid’ which formed plaques between the brain’s nerve cells (neurons). Another called ‘Tau’ created neuro-fibrillary tangles inside these cells. They kill the neurons, causing the electrochemical communication between them to collapse. Thereby the brain function becomes severely affected progressively,” he explained. He realised after his research that doctors have not yet studied the depths of the brain to solve the mystery. This meant his spouse and he had a long way to go. Milestones His wife started going through various changes. They were big milestones that took place over time. “The first milestone was when she forgot stuff that she collected in the supermarket and forgot to collect her change when leaving the supermarket. In the car she would ask where we were going, repeatedly,” he said. In 2013 another change took place. This was the second milestone: incontinence – when the problem became more difficult to manage. They saw a neurologist and she was given drugs but that didn’t work. “My occupation was now getting substituted by this,” he said. He was in a complex position until he met someone who underwent the same problem but was successful. Talking to this person was helpful. This is when he realised how important it was to talk to other people in this situation. He saw the importance of support groups. “The third milestone was when she started using ‘sharp wo

rds’ targeted at family members,” he said. Though initially shocking and embarrassing for most people, now he says, if she wants to use those words, then let her use those words; it’s not important what other people think! The fourth milestone was when the situation progressed to helping her in eating, dressing and bathing. She could still do these things but needed his assistance. The condition was worsening and he talked of his anxiety and fear when the spouse doesn’t actually ‘see’ him. One-stop-shop “The problem in Sri Lanka is there is no one-stop-shop,” he said. For a particular condition, sometimes one needs to see doctors of various specialties. In this case he couldn’t find all the specialists he needed in just one place but had to go to different places; for example, he had to go to one place to see a neurologist and another to see another kind of specialist. Since there was no connection between the doctors, they don’t know what’s going on with the patient and he has to carry the information from doctor to doctor. If they were all in one place then it would make it so much easier for the patient, he said. He added: “Furthermore this is not a known sub-specialty. If I need to see a cardiologist, I know where to go. With this illness I had to do a lot of searching and research on my own.”

Patience “Now it’s been six years since the first diagnosis and the situation is currently manageable so I can handle it by myself. There are good days and not so good days. It’s on the not so good days that we see that the patient has become a different person. The most important criterion for a caregiver as we go through these stages is patience. If you don’t have patience, then you have a serious problem and I’m not talking about small amounts of patience – I’m talking ‘huge’ amounts of patience!” he exclaimed. “They will keep asking the same questions repeatedly – we must answer softly without resorting to a raised voice. I respond to her questions each time.” All kinds of changes keep taking place and the caregiver has to expect unforeseen behaviour from the patient. Sometimes she talks to her daughter’s photograph; she has mood swings and frequent insecurities. One has to get accustomed to the situation and handle it the best he or she can. “These are things we have to learn through care giving,” he added. He has learnt that getting involved in creative activities is excellent for a person in her condition. Finding help “The score has now dropped to 6/30 after six years!” he said. She has been prescribed another drug and two drugs must work together to treat her. “The frustration for me as a caregiver is not knowing where to go for help. There is no training place. Caring for a person who has Alzheimer’s is different from caring for the elderly,” he said and added that he went to university to learn engineering but didn’t know where to go to learn how to take care of his sick wife. “The carer has to be trained on the job. The publicly available and advertised caregiver services are there but at the moment I don’t have much confidence in them,” he said. “Another problem with this is the spouse might not agree to that person,” he added. “At the later stage they may not know what’s going on but at the earlier stage they know and would want to talk to the person and approve.”

Legal aspect Complications arise in situations where the consent is required from both parties in legal proceedings and other matters, especially with regards to money. With the increase in expenses due to the treatment and medication, a smooth inflow of money is essential. Complications in the banking system would be a barrier to this. His wife has come to the point where she can’t even remember her own signature, so she can’t give consent to transactions. This makes it difficult to make certain transactions where both parties are needed to grant consent. Lanka Alzheimer’s Foundation When he was lost and in bad need of support, he came across the Lanka Alzheimer’s Foundation (LAF). He commended the support he received from them saying, “They have a fantastic set of volunteers. Though small in number they are absolutely dedicated. Even though they are not caregivers, I now have people to discuss and talk to about my wife’s illness.” LAF is an approved charity incorporated in March 2001 and is registered with the Ministry of Social Services. It supports people who are diagnosed with dementia and their families. LAF President Lorraine Yu said: “LAF was declared open on World Alzheimer’s Day on 21 September 2011. We will be celebrating our third anniversary on Sunday. LAF’s dream is to create a better world and a safe and secure environment for people with dementia and their families. Our mission is to improve the quality of life of the Alzheimer and dementia patients and enhance the wellbeing of their family carers. “Our services include raising awareness, combating stigma, befriending and counselling, education on risk reduction, memory screening and assessments, activity centre and free dementia drugs for the underprivileged. We don’t diagnose and we don’t prescribe – that is the area for the doctors.” Every year their supporters come together and join them in their annual walk to help create awareness. This year their Annual Memory Walk will be held on Saturday, 27 September. This is the 13th year that they are having their memory walk and she invites the public to join them and support the cause. WHO involvement with LAF Also present at the event was WHO Sri Lanka Representative Dr. Lanka Dissanayake. WHO has been actively involved in LAF’s activities and has been very supportive of its cause. “Alzheimer’s is a Non-Communicable Disease (NCD),” she said and added that the illness is one that is suffered globally, with numbers increasing fast. “Dementia cases are set to triple by 2050 globally and the numbers are quite alarming. The reality is many people; including people in Sri Lanka are not diagnosed. Only one in four people are diagnosed and the illness is more prevalent in females,” she said. According to Dr. Dissanayake, the main causes of the illness are diabetes, high blood pressure and smoking while measures to take in prevention are to stop smoking, take medication and reduce salt intake for blood pressure. She noted that the way to tackle this illness is by early diagnosis, raising public awareness and providing better care and added, “It’s a very costly disease. In the US it costs around $ 17 million per year for a patient.” “With the high emphasis on Alzheimer’s and dementia, it is very encouraging to note that organisations like this have been doing this work for a long time. This is one of the significant steps from the Sri Lankan and WHO point of view. Psychologists, neurologists and consultant psychiatrists have taken this subject on,” Dr. Dissanayake said. “This is an important illness and there is much to do about it,” she stressed.