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End stage of dementia is the final, most difficult part of this terminal disease's progress. Thus, caretakers may find it to be incredibly demanding, even impossible to manage to treat their family members or patients successfully. In this stage the brain of the demented person is almost completely inactive, containing almost none of the previously present cognitive functions, affecting the physical health of this person as well.

Many people who are taking care of their demented family members cannot manage to do this on their own, once the final stage commences. Rather, they hire someone to do the job or admit the person to a hospital or a nursing home.

Changes in the Brain During End Stage Dementia

People in this stage of the disease have neither short nor long-term memory. Thus, they do not understand anything nor recognize any of the people they knew, including their own reflections. They might speak gibberish or not speak at all.

Changes in Personality and Behavior

People in the final stage of dementia do not smile or show any positive feedback. However, they may be upset easily, crying or sobbing often. They may sleep all the time or be restless and in need of sedatives or sleep medication. They cannot feed themselves nor they can swallow food on their own. So, they need great help with eating and drinking. Also, they can grab onto things and not let go or react negatively to touching and being touched.

All in all, people in end-stage dementia cannot take care of themselves and are usually bed-bound, being prone to seizures. Their bladder and bowel movement functions are not controlled and their muscles are stiff. Due to all these states of affairs, they are likely to suffer from infections and diseases like pneumonia, dehydration, skin problems, and urinary tract infections.

What Can a Caregiver Do?

The caregiver needs to dedicate him/herself completely to the needs of the patient. He/she will need to wash, bathe and clean the patient, as well as feed, dress him/her, and provide skin care and help during urination and bowel movements.

Every time the caretaker enters the patient's room, he/she should introduce him/herself, since the patient may forget or be in doubt. During skin care, the caretaker should be gentle and caring, applying the lotion to elbows, buttocks, and heels especially, checking other areas for any sign of problems.

The caretaker should encourage the patient to eat, chew and swallow enough food regularly and should provide adequate conditions for sufficient sleep for the demented patient.

Finally, in case of needing additional help or alternative medical opinions regarding the health of the patient, the caretaker should contact other helpful sources.

Caring for someone near the end of their life is an integral aspect of dementia care. The advanced stage of dementia is recognised as a terminal illness; however, many relatives and health professionals find it difficult to acknowledge this. Creating awareness about advanced dementia is therefore essential. It is important to focus on dementia as a disease that starts affecting the brain, but then, as it progresses, affects the whole body.
  • In a condition like advanced dementia, it is beyond the skill of doctors to give an accurate estimation of how long the patient is going to live. Researchers have been working on tools to estimate the lifespan of people with dementia in the advanced stages of the disease.
  • The terminal stage is often defined by a set of symptoms that include rapid irreversible deterioration on a day-to-day basis, the inability to eat orally, changes in breathing patterns, weight loss, lack of mobility and semiconsciousness.
  • Ethically appropriate care in advanced dementia consists of several principles. Good person-centred care responds to the needs of the individual patient successfully. There has been a steady increase in the number of dementia patients receiving palliative care in hospices in the developed world, but this has not received considerable attention in the developing world.
  • Advanced care planning (ACP) is also essential in dementia. It refers to a process of discussing an individual's preferences for care they would like to receive at a time when they may no longer be able to make such decisions or be able to make their wishes known. It is quite difficult to know the best time to carry out ACP in dementia as the patient loses the capacity to make decisions as the disease progresses.
  • Artificial nutrition is a sensitive issue and a difficult decision to make for professionals and relatives alike. At some stage of the disease, many patients stop eating. Patients in an advanced stage of dementia do not eat for several possible reasons, including impaired swallowing, fear of choking, aspiration, lack of taste and aversion to food.
  • Progressive loss of learned behaviour is a core feature of dementia. As commonly believed, tube feeding may not increase survival rates in severe dementia. There is also some evidence to suggest that tube feeding is not associated with improved nutritional status, prevention of pressure ulcers or reduced infections.
  • Diagnostic tests and procedures should be carefully chosen to ensure that they have some bearing on improving quality of life. Stressed relatives who want the best for their loved ones can sometimes forget that the most invasive and aggressive tests and treatment may not necessarily contribute to a better quality of life. It is often the responsibility of the professional to focus the attention on quality of life. Aggressive interventions should be replaced by good quality palliative care resulting from effective care co-ordination. The focus should be on symptom management and developing specialist palliative care services.
  • The training of nursing and auxiliary staff in hospitals and care homes in the palliative care approach is essential to improve their knowledge and skills in this area. Even if there are ethical and practical difficulties in conducting good-quality research in advanced dementia, there should be no reason not to use a palliative care approach in dementia management.
✓ Fact confirmed: End-of-life care issues in advanced dementia Sudhir Kumar and Jacob Roy Kuriakose; 2013 Sep

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