“Alzheimer, awareness is not enough”

“‘Life cannot hide behind dementia,’ says the SNS campaign. A diagnosis doesn't erase a person. But families report months of waiting for consultation and return home without knowing who to accompany or who to ask for help.

A campaign can change the language. Care needs to change life.

Dementia can compromise memory, language and decision, but it does not eliminate all forms of presence. One can forget the name of a song and recognize its rhythm; not identify a face and find safety in a familiar voice. When she refuses to bathe, screams or departs, “excitement” describes what we observe, does not explain the origin. It can result from dementia and simultaneously signal pain, acute confusion, fear, shame or loss of control over intimacy. Evaluating treatable causes and unrecognised needs is essential. Understanding before controlling is clinical competence and ethical responsibility.

Families need guidance, home support, rest and accompaniment. Professionals need time, teams, supervision and training to interpret non-verbal signals, preserve choices and evaluate before medicating or restricting. Without these conditions, a need can go unnoticed and a person be reduced to a problem to manage.

In Scotland, at least one year of post-diagnosis support is expected. In the Netherlands, case management articulates care and family. These are continuity references, not perfect models. Portugal also defined integrated routes in the Local Health Units. It is important to ensure multidimensional evaluation, reference professional, revised plan, support for the caregiver and access to continuous and palliative care.

The result is measured in people's lives. How much do you expect? What support do you receive? Does training improve care or produce certificates? The place where you live should not determine the right to care.

The Portuguese Catholic University participates as a partner in the In-Touch European project. In residential structures that accommodate people with advanced dementia, differentiated care must be ensured. The project will evaluate a non-pharmacological palliative intervention focused on comfort, relationship and social involvement, training teams and involving families.

On World Alzheimer's Disease Day, awareness is just the beginning. If the person remains present, the system must remain with him. Recognizing without accompanying is another way to let it disappear.”