The lives of about 50 million people worldwide have been shattered without any hope of recovery by Alzheimer’s or some other form of dementia. The number is increasing by about 10 million a year, according to the World Health Organisation.
In Portugal, around 200,000 people – more than twice as many women as men – have dementia. That’s the latest round figure from the non-profit, non-governmental organisation Alzheimer Europe.
At least as many people giving close care to family or friends with dementia have been heavily impacted by the disease, but in a very different way.
Dementia is a cruel syndrome or group of symptoms associated with an ongoing decline of brain function that usually develops slowly over years and sometimes without clear cause.
In general, carers only notice the symptoms sometime after they break out, as memory loss, attention deficits or other cognitive impairments are assumed to be part of the normal ageing process, says Dr Margarida Ferreira, a psychologist with the Alzheimer Portugal association.
“We might be a bit more forgetful as we grow older, but normally, after a while or with the help of a cue, we are still able to recall. So, the tendency among close family and friends is usually to ignore early symptoms and, only later, when something significant or dangerous happens, do they think that all might not be okay.”
Dr Ferreira points out that close caregivers can be burdened with “physical, mental and emotional exhaustion”.
In some cases, she says, “it is not only that you are constantly supervising the person with dementia and helping them in their needs without any training or someone to share the care, but also that role inversion, as with a son taking care of a parent or a husband of a wife. This can add to the loss of someone you once knew differently.”
Caregiving can exhaust a carer’s ability to remain calm and be patient, especially, for example, after repeatedly listening to the same talk over and over again.
“This is generally because carers don’t have the time or support for their own personal needs, which includes comprehension and acceptance of the disease as well as managing their own feelings and expectations,” says Dr Ferreira.
“This lack of self-care and support, along with other factors, can, in some cases, lead to physical and mental health issues, such as anxiety and depression.”
Portimão and Lagoa host the two local offices of the national Alzheimer Portugal organisation in the Algarve. This is where Dr Ferreira provides professional advice upon appointment to those in need, according to each specific situation.
“In some cases, the main concern is the medication, in others, personal care or specific behaviours,” she says.
Dr Ferreira suggests that caring family and friends experiencing fatigue should take advantage of the information available in English as well as Portuguese on the Alzheimer Portugal website: alzheimerportugal.org
Here we quote directly from part of the website:
10 steps to becoming a healthier caregiver
Do you feel overwhelmed by caring for another person to the point of neglecting your physical, mental, and emotional wellbeing? If you don’t take the time to take care of yourself and your needs, you could be putting your life and health at risk.
1. Identify changes as soon as possible
Symptoms of dementia develop gradually. Whenever you notice significant changes in the person’s memory, mood or behaviour, talk to your doctor. Don’t delay. Some symptoms can be controlled.
2. Discover the resources available in the community
Find out about the support, services and equipment available. Day centres and home support are some of the answers that can help you in providing care and in carrying out day-to-day tasks.
3. Be informed
As the disease progresses, it may be necessary to acquire specific knowledge and skills to face the challenges that arise. Try to participate in workshops and other training actions, with specific and diversified content, which can help you understand and better deal with the changes in behaviour and personality that accompany the disease.
4. Seek help
Trying to do everything yourself can lead to exhaustion. Seek support from family, friends and available resources in the community. Help lines and support groups are some of the resources that can help you find comfort and safety. If stress becomes disabling, seek professional help.
5. Take care of yourself
Pay attention to your diet, exercise and rest as much as possible. Watching your health will make you a better caregiver.
6. Control your stress level
Stress can lead to physical disturbances (blurred vision, gastrointestinal disturbances, high blood pressure) and behavioural changes (irritability, lack of concentration, changes in appetite). Be aware of your symptoms. Use relaxation techniques that make you feel better and talk to your doctor.
7. Accept the evolution of the disease
The needs of people with dementia change over time and with the evolution of the disease. Demands may exceed your responsiveness. Knowing the resources of the community – day centres, home support services and homes – can facilitate the decision to share the provision of care with others.
8. Make decisions of a legal and/or financial nature
Plan ahead in advance. Know your rights and those of the person with dementia, as well as the legal procedures to be followed after diagnosis and during the course of the illness. Involve, whenever possible, the person with dementia and the closest family members.
9. Value yourself and don’t blame yourself
Remember that your care makes a difference and that you are doing the best you can. Don’t blame yourself for not being able to do everything yourself. Even though care may no longer be provided by you, as the disease progresses, you can continue to ensure that the person is well cared for and feels safe.
10. Talk to your doctor regularly
Make time for yourself, get regular routine check-ups, and listen to what your body tells you. Watch out for exhaustion, stress, sleep disturbances and changes in appetite and behaviour. Ignoring these symptoms can seriously affect your physical and mental health.
The caregiver in stress – 10 warning signs:
1. Denial about the disease, its evolution and its effects on the diagnosed person.
“I know my mom will get better.”
2. Anger toward the person with dementia or other people, anger that there is no cure, or by the lack of understanding of others.
“If he asks the same question again, I scream!”
3. Social isolation, withdrawal from friends and loss of interest in activities that before he liked to do.
“I don’t feel like hanging out with anyone anymore.”
4. Anxiety about having to face one more day about the future.
“What will happen when he needs more care than I can give?”
5. Depression that affects wellbeing and the ability to cope with everyday challenges.
“I don’t want to know anymore.”
6. Exhaustion feeling that it seems impossible to carry out the necessary daily tasks.
“I’m too tired for this.”
7. Insomnia caused by an endless list of worries.
“What if during the night he gets up and falls?”
8. Irritability that translates into bad mood and provokes negative responses and reactions.
“Leave me alone!”
9. Lack of concentration that impairs day-to-day activities
“I’ve been so busy I forgot I had an appointment.”
10. Health problems that begin to compromise physical and psychological wellbeing.
“I don’t remember the last time I felt good.”
To contact Alzheimer Portugal offices in Portimão and Lagoa: Monday-Friday: 9.30-12.30
965 276 690 | [email protected]
By LEN PORT
Len Port is a journalist and author based in the Algarve. Follow Len’s reflections on current affairs in Portugal on his blog: algarvenewswatch.blogspot.pt