The Alzheimer’s Association Spain states that currently more than 800,000 people are living with Alzheimer's disease in Spain. In this insightful article a family doctor describes the scales of the challenges facing dementia sufferers, their families and those who care for them.
Dementia affects the whole family
As a family doctor the most serious problems I see arise from a breakdown in family relationships, addiction, poverty, work related stress and dementia.
Chronic problems in the health of a close relative such as cognitive impairment and dementia force members of the family to become caregivers in addition to their other roles and responsibilities this can lead to what we term “caregiver syndrome”. This condition is characterised by anxiety and/or depression. Sustained stress can only be alleviated through strategies for sharing responsibilities and respite care which all too often is not available.
When a family member suffers from dementia this can affect practically all family members. This is particularly true of those who give direct care. They lose their sense of freedom because of the burden of their responsibilities.
This is one of the great unresolved issues in Spanish society today when nearly one million people receive permanent disability benefits, but barely 30% of the families caring for a chronically ill person receive some kind of assistance to support them. More than 70% of the remaining 70% provide this care without any kind of support, being exposed, among other things, to exhaustion, anxiety, depression, etc.. Almost 8 out of every 10 people on whom the responsibility of caring for a sick relative falls are women, most of them wives or daughters of the sick person, with an average age of over 60, although a significant proportion (25%) is over 65. More than 20% of caregivers are also responsible for someone under 18 years of age, and more than 10% have had to give up work to devote themselves to caring for their relative.
Caregiver syndrome is characterized as an inadequate response to a very demanding situation from an emotional and physical point of view. It usually translates into physical and psychological exhaustion, which is expressed in 3 phases:
1/ Physical and mental fatigue
2/ Affective discomfort
3/ Dysfunction and
4/ Resolution (when the family member dies or no longer requires care.
These are the cases that should be detected and treated by the family physician.
Challenges facing families caring for someone with dementia
The coronavirus pandemic worsened the existing gaps and deficiencies in the service provided to dementia sufferers and their families. The causes of these deficiencies are legion including the economic crises suffered by the country and also the advice of practitioners falling on deaf ears.
To address this situation we need an action plan with adequate financial and management resources to make it work.
We also need to see those who suffer from dementia and their families in the wider context of Mental Health Care in Spain. According to official data in this country there are more than one million people suffering from a serious mental illness, i.e. between 2.5 and 3% of the adult population (0.7% suffer from schizophrenia and 0.5% from bipolar disorder). The percentage of people in need of treatment who do not receive treatment or receive it inadequately is close to 50%. The World Health Organisation estimates that, during their lifetime, around 25% of the population will suffer from some kind of problem affecting their mental health.
Dementia – the silent epidemic
During the pandemic more than 3 million people died. In Spain by 2021 3.5 million cases were recorded.
There is however another silent pandemic, that of primary dementia, Alzheimer's disease, which continues to grow - and to address the needs adequately will require a huge investment and effort. The current situation is untenable. “Care by telephone” is only a temporary fix and can reinforce the problems caused by lack of physical contact and depersonalisation.
We need to learn the lessons of today to prepare for the future. We need much greater understanding of the issues facing society particularly those most vulnerable such as those suffering from dementia. That understanding must lead to greater investment and action.
Dr Francisco Javier Ayape Amigot, Family Physician
Santiago de Compostela
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