INFORMAR+: 213 610 465 – A SYMPATHETIC VOICE AT THE OTHER END OF THE LINE | Fundação EDP

INFORMAR+: 213 610 465 – A SYMPATHETIC VOICE AT THE OTHER END OF THE LINE

Número da linha de apoio: 213 610 465


The history of project Informar+ is short and can nearly all be told using numbers. The phone line created by the Portuguese Association of Family and Friends of Alzheimer Patients (APFADA) to support carers of people with dementia was created in 2014. Their work is carried out by three psychologists who cover the service on weekdays, from 9:30am to 5pm, and who also see people in person, with psychological counselling, by appointment. In its first year, the phone number 213 610 465 rang 1 457 times and, in 2017, that figure was largely surpassed, with a total result of 2 859 calls. The project has been in place for three years and it hasn’t stopped growing ever since. In 2015, with support from the EDP Solidarity programme, it received another boost.

This piece of information is, by itself, revealing of a continuous evolution, but it can be complemented by the project’s annual activity reports, which show who calls, why they call, etc… “It’s true that the service clearly exceeded our expectations, and we even received some international calls asking for information”, confirms the project leader, Ana Margarida Cavaleiro, Director of APFADA Training and Projects Department.

But there is a lot more to tell, which escapes the remit of Excel spreadsheets. And, for that, we need to go into the association’s small room, where Informar+ is run from, hear the phone ring and perceive the tone at the beginning of each conversation. And, above all, we need to listen to the words of those who give a voice to this initiative every day.

Carina Carvalho is one of the psychologists in this team coordinated by Ana Margarida Cavaleiro, Director of APFADA Training and Projects Department and the head of Informar+. “Those who call us are usually close family members, partners or children of people with dementia”, Carina begins explaining. “They want to find out how they can get a diagnosis, or how to deal with the person with dementia. Many are full-time carers, and we realise that they really need to just talk, let it out…”, the psychologist says. Being sensitive and able to listen are essential tools. “The information people are looking for is often on our website – I’m thinking, for example, of what is called “sundowning”, and how the change in light at the end of the day can leave patients very restless, to which we devoted an entire piece containing numerous tips –, but the person might not know it’s there, or how to access it… We always try to help”, she explains.

There is a pre-defined interview script which enables the experts to evaluate the carer’s needs and to meet their expectations, either by answering their questions over the phone, setting up an appointment at APFADA’s office, or referring them to the appropriate service. Carina Carvalho and the other experts on the team always have to hand a list containing the names of psychiatrists and neurologists specialised in dementia, and another one with the names and contact details of nurses working in different areas of residence and who have received specific training at APFADA. They also often refer to the carer’s support manual, which includes many practical tips to improve their day-to-day. They also explain the necessary steps to, for instance, get the court to determine that the family member is legally not imputable due to illness. Another frequent problem is to get access to inpatient care through social security at lower prices. “They often call us to ask about openings at our institution, Alecrim House, which is run by APFADA, but, at the moment, there are 400 people on the waiting list”, regrets Carina Carvalho.

At the other end of the line, the psychologist often perceives the tiredness, frustration or, in worse cases, the depressive state of the carer. It’s not always easy, it’s almost a state of mourning that the carer must go through. “They need to accept the person with dementia and, above all, it’s important that carers learn to enjoy time for themselves”, she says. Anger, frustration and, above all, feelings of guilt are very common: “Go on holiday? What if my mum dies?”, they ask themselves. But “it’s important that the carer realises that that break will allow them to clear their heads, which means they will come back much better able to provide better care or the patient”, Carina Carvalho emphasises.

There are some cases where the carer’s situation requires more regular psychological support, and being able to provide those appointments – albeit only in Lisbon and for members – is another victory for APFADA. More serious situations, such as only children overwhelmed by two sick parents, or family members who have to deal with the patient’s aggressive behaviour – as is the case with a father who stabbed his own son – leave permanent emotional marks. Fortunately, statistically-speaking, these cases are in a minority. The phone line Informar+ – which also works via email and text message – is primarily contacted by people with questions about a potential diagnosis or with very practical questions (see “Strategies to improve the life of Alzheimer patients”, below). There is no cure for Alzheimer’s disease, but the rate of evolution of the illness can be slowed down, and the quality of life of both patients and carers can also improve substantially with better information and small changes in attitude. “Every time a carer is able to change their behaviour in a way that helps the person with dementia, that constitutes a victory to us”, concludes Carina Carvalho.

 

Strategies to improve the life of Alzheimer patients

Adjusting routines and making small changes at home makes day-to-day life of both carers and patients easier. Here are some of the suggestions from the Carer’s Guide, approved by APFADA.

 

  • Set up a daily routine for the patient and stick to the same times for personal hygiene, meals, etc., without making big changes;
  • Put up signs on doors to identify the different rooms in the house and stick up photos with captions on cupboard doors to indicate what’s in each one;
  • Put up photos of friends and family members throughout the house and write down the names of each person underneath;
  • Avoid temporal expressions such as “snack time” or “in a short while”, and be as precise as possible: “when we have all finished eating”, or “when the washing machine cycle finishes”;
  • Let the person get dressed on their own, even if they do so very slowly, laying out their clothes in the right order;
  • Limit the amount of time the person sleeps during the day and, in cases of insomnia or night walks, take some precautions: lock the doors and windows, put up barriers on stairs, fix down rugs, always leave a light on;
  • Avoid constantly correcting the person. When questions become repetitive, try to ignore the question, take a break or write down the answer and show it to the person, reassuring them as you answer them;
  • Never take the patient’s reactions personally. If the patient becomes violent, try to distract and reassure them; if that doesn’t work, prioritise your own safety and leave the room to allow the person time and space to calm down.

(Text by Helena Viegas)

09 Feb 2018