Hankkeen tausta ja tarve

Kehitysvammaisilla henkilöillä on yhtäläinen oikeus muistisairausdiagnoosiin ja sopivaan oikea-aikaiseen hoivaan/hoitoon ja tukeen kuin valtaväestölläkin.

Muistisairauksien tunnistaminen kehitysvammaisilla henkilöillä on haasteellista.
Tutkimusmenetelmiä tulisikin kehittää heille soveltuviksi niin, että hoitopolku toteutuu.

Läheisten ja lähityöntekijöiden valmiutta kehitysvammaisten oireiden seurantaan ja arviointiin tulisi kehittää muistiongelmien tunnistamista palvelevaksi.

Muistiyhdistyksillä ja Muistiluotsikeskuksilla on olemassa muistisairauksiin liittyvää yleistä osaamista ja tukimuotoja, jotka eivät sellaisenaan sovellu kehitysvammaisten muistisairaiden tueksi. Näitä
tukimuotoja olisi tarpeen kehittää ja soveltaa palvelemaan myös kehitysvammaisia muistisairaita henkilöitä ja heidän lähiverkostoaan.

Nämä asiat huomioitaessa ikääntyvä kehitysvammainen henkilö pystyy elämään pidempään hyvää elämää omassa kodissaan.

Ajankohtainen artikkeli "Sallitaan elämä", emeritaprofessori Sirkka-Liisa Kivelä (2014).


Seuraavalle sivulle Hankkeen aikataulu ...


CHALLENGES IN IDENTYFYING MEMORY DISEASE OF AN INTELLECTUALLY DISABLED PERSON


The goal of this page is to enable early identification of adults with an intellectual disability showing symptoms so as to facilitate engagement in the diagnostic process, and enable them and their carers to begin to plan for additional care and health intervention as appropriate as dementia progress.


What is different when an intellectually disabled person has a memory disease?


As our life expectancy grows longer, an ever-increasing group of people come into contact with memory disease. This includes intellectually disabled people as well. There are no accurate statistics about the rate of occurrence of memory disease in intellectually disabled people, but it has been estimated that they have up to 2–3 times the risk of contracting a memory disease. It is also characteristic that memory disease in disabled people reportedly progresses faster. But could this perceived fastness be the result of a delay in the detection and diagnosis of the disease?


Why is a model for early detection necessary?

Everyone has the right to have their disease treated timely and correctly. Symptoms resulting from a memory disease should not go unnoticed because they are overshadowed by an intellectual disability . A unified and widely used model for early detection is missing.


Existing memory tests are not suitable to evaluate the memory of a person with anything more severe than a mild intellectual disability. On top of this, the first symptoms of a memory disease in an intellectually disabled person might not be memory-related, but instead symptoms relating to changes in different areas of functionality are more significant. The most important changes are seen in everyday life, changes that are apparent when compared to the past.


The most important diagnostic method with memory disease is gathering a comprehensive patient history. The person gathering the history should be someone with extensive knowledge of the intellectually disabled person’s life and personality. The method for early detection helps the people close to the disabled person collect all the symptoms and other necessary background information into a comprehensive whole. A diagnosis by a doctor necessitates a detailed patient history. This model would be a significant aid in achieving that. Diagnosis is said to be the most beneficial treatment of a memory disease.

How to develop a model for early detection?

We do not need to re-invent the wheel. These models already exist, for example: The United States-based National Task Group has developed a model suitable for early detection, The NTG-Early Detection Screen for Dementia, EDSD. These existing, already rather widely used and well-tried models should be studied and applied to serve the cultural needs of different geographical areas and countries and, most importantly, so they serve intellectually disabled people. The Finnish MUISTIKKA project has applied this model and formed their own version of it. The model is currently being tested.

Maria Eriksson

MUISTIKKA-hanke

Käännöstyö : Delingua Language Services