Unit 1. What is Dementia?
Dementia is a chronic progressive brain disease caused by changes in brain cells. It is manifested by disorders of memory, thinking, orientation, recognition, comprehension, arithmetic and learning abilities, and speaking, expression and judgment. Dementia is not part of normal aging, but a result of brain disease.
Every forgetfulness is not dementia. We talk about dementia when an individual’s cognitive abilities (ability to remember, understand, speak, orient and judge) deteriorate to the point that it is disruptive in everyday life.
Timely recognition of the first signs of dementia is very important, as well as quick diagnosis, appropriate treatment, and lifestyle help to improve the quality of life of patients and their carers.
There are different forms of dementia, among the most common are the following:
• Alzheimer’s disease – dementia due to Alzheimer’s disease represents 60% – 80% of all dementia cases, typical symptoms are memory and orientation problems;
• Lewy Body dementia – symptoms are similar to Alzheimer’s disease or Parkinson’s disease, often accompanied by visual hallucinations;
• Vascular dementia, is the result of numerous successive strokes in the brain, symptoms depend on the affected region of the brain, a stepwise course is characteristic
• Frontotemporal dementia is expressed in the patient as changes in behavior and personality, inappropriate social behavior, or language difficulties.
Unit 2. Dementia changes
Dementia causes different changes in a person’s cognitive, behavioral, and emotional ability, depending on the form of dementia.
Alzheimer’s dementia The disease develops slowly and usually begins unnoticed, especially with memory impairment for recent events. In the initial phase, patients are still relatively well-organized but have problems with forgetfulness and speech, concentration, and time disorientation. As the disease progresses, the symptoms escalate to the point that the person becomes completely independent.
Vascular dementia is the second most common form of dementia that can develop after a stroke blocks an artery in the brain, but strokes don’t always cause vascular dementia. Decreased cognitive abilities can occur immediately after a stroke (confusion, difficulty with orientation, speaking or understanding speech, and loss of vision) or as a gradual impact on reasoning, planning, concentration, memory loss, or other thought processes.
Lewy body dementia begins with signs similar to Alzheimer’s dementia (memory disorders, problems with spatial orientation, speech, and other cognitive abilities) or Parkinson’s disease (tremor, slowness of movement and thinking, increased muscle tone, less pronounced facial expressions). Recurrent falls for no apparent reason, short-term loss of consciousness, and fluctuations in attention are also common. Illusions usually appear early but also eavesdropping (for example, a person sees animals, people, or color patterns). Illusions are often accompanied by delusions that make a person feel threatened and upset.
Frontotemporal dementia. Memory disorders are not usually the first sign of the disease. People can be oriented and remember the events of the last days, but on another occasion, they can’t recall them. Problems begin unnoticed, people gradually use fewer and fewer words, pronounced personality changes and inappropriate social behavior can occur (accumulation of things, eating only certain foods, eating inedible items).
Unit 3. In my shoes – Person human right centered approach
People with Dementia and their carers have the same rights as every other citizen. However, they often face cultural, social, and economic barriers to fulfilling these rights. The main barrier to exercising their rights in everyday life is the lack of carers’ and professionals’ knowledge about the individual and specific needs of people with dementia or how to support them in various day-to-day situations.
People with dementia are seen and reduced to their losses and disabilities. Every difficulty they have in a given task, in their day-to-day life, is seen as a sign of that same inability. The Person, beyond the limits imposed by Dementia, may see their capacities limited, seeing themselves removed from the possibility of making mistakes, like any other person, just for having this diagnosis. People with Dementia may see their Fundamental Rights, their right to active participation in society reduced or their freedom limited because of their health condition or age.
The focus shall be on the person, not on the disease, on one’s abilities, supported by guidance, information, and the conditions necessary for being an active member of the household, community, and society.
The Person must be seen as the central point, seeking to minimize losses induced by dementia, compensate for possible changes, and focus on the symptoms that can arise. By focusing on the Person, we look beyond dementia (impairments), we build the care on the Person’s unique life story, characteristics that make him/her special to his/her loved ones, and his/her capacities.
Unit 4. First steps on caring – Family focus
Carers of people with dementia most often experience feelings of guilt, sadness, and shame, but often also anger and helplessness.
Changes related to dementia require a lot of patience, understanding, and empathy, so carers need to get appropriate support by joining self-help groups, and lectures and turn to professional counselors for psychological, health, legal and social advice.
It is also important for them to receive as much information as possible about the course of the disease immediately after the diagnosis. This way they can provide an adequate quality of life for the person with dementia and for themselves.
Some basic tips for communicating with a person with dementia: approach kindly and calmly, look him/her in the eye, pay attention to body language, speak clearly, distinctly in a calm voice, use short and clear sentences, and do not oppose him/her, be patient…
Unit 5. Care Strategies
A structured routine is essential for people with dementia, to reduce feelings of uncertainty and a sense of continuity.
A person with dementia can participate and help with activities for a long time, although it is very difficult later to find activities that he can still do. So he/she should stay active for as long as possible in the areas he/she still masters and enjoys. A person with dementia is actively involved in daily activities such as washing, brushing teeth, cleaning, cooking, playing games, and personal hygiene. All tasks should take place in the established order, in the environment, they are familiar with and should be adapted to the individual’s cognitive and physical abilities.
The abilities of people with dementia can change from day to day. At a certain stage of the disease, people with dementia are no longer able to perform daily tasks, and then someone else has to take over the daily tasks instead.
Unit 6. Promoting a Better Care
Hippocrates said, “it is more important to know what sort of person has a disease than to know what sort of disease a person has”. Treatment and care programs need to be tailored to meet the individual needs of persons with dementia and carers.
The treatment and care programs should be customized to cognitive, behavioral, and functional symptoms of individual person with dementia. Routine and familiarity are of great importance for Persons with dementia. The daily structure can help decrease undesired behaviors such as aggression, restlessness, anxiety, and agitation. As a result, the caregiver will experience less stress and be able to give better care. In accordance with the specific needs of an individual, their daily life should be structured. This way the caregiver establishes and maintains a stimulating and safe environment for the patient.
Dementia is marked by several moments of transition that often correspond to losses in the functionality of the Person with Dementia. From the moment when the Person with Dementia, who could live alone, can no longer be without support, to the moment when he/she needs 24h support at home or when entering a care home.
Unit 7. Caring for the Caregiver
Caring for a person with dementia at home can be a huge emotional and physical burden. Even the most qualified and competent caregiver, needs to look for his/her best emotional condition, to avoid burnout or situations where they find themselves without control over what is happening.
There are several challenges inherent to the act of caring. The unpredictability of the disease, the constant changes, and the confrontation with the constant deterioration of the capabilities of the loved one, makes the emotional demand intensify, leading many caregivers to face an increase in anxiety or depressive symptoms, physical and emotional fatigue, which can even lead to burnout situations.
Carers need to take time for themselves, even if only for a short time. A much-needed break can be provided by engaging home a companion for short-term socializing with a person with dementia. If a person with dementia wants company, they can also be included in daycare centers or workshops organized by them, daily activity centers for the elderly, or intergenerational centers. Carers should get information from community care centers on which support can be provided by them.
Carers can join self-help groups where they can talk about their problems and share experiences with other members of the group.