People with dementia know that they are dying
From: Alzheimer Info 2/15
Accompanying people with dementia to the very end - what relatives want
The long farewell
When there is talk of a “long farewell”, it is often in connection with dementia. In the course of dementia, it is time and again to say goodbye to existing abilities and skills. In the advanced stage of dementia, people often move to a nursing home, for example when incontinence or challenging behavior can no longer be managed at home. The home becomes the new home for the dementia patient. A good relationship between caregivers and relatives is important during the entire time you are in the home. Good communication is particularly important in the last phase of life and especially in the dying phase.
It is often difficult to determine when the last days, weeks and months will begin for people with dementia. Sometimes an increased withdrawal of the sick can be observed, often food and drink are refused. Often it is acute pneumonia that cannot be cured. Usually relatives and caregivers who have known the resident for a long time have a good feel for the changes.
Support at the end of life
If relatives are asked what they want most for the dying person, then these are usually these three points:
- To be able to die in familiar surroundings
A change of location to the hospital is a great burden at the end of life and should be avoided if possible. Maybe the medical care is better in the hospital - but that no longer plays the decisive role in the dying phase. Pain treatment is also possible at home or in the home.
- Not having to suffer
Most of the time, death is preceded by an illness such as pneumonia or a tumor. It is therefore very likely that pain will occur in the last few weeks and months. Since people with dementia often cannot name their pain and often do not understand the question "Are you in pain?", Careful observation of facial expressions, gestures and behavior is necessary. If pain is suspected, pain medication should be given. The dying often refuse to eat or drink. This has to be recognized and also endured. Feeding through a nasogastric tube is no longer useful at the end of life. Oral care, however, is experienced as soothing and beneficial.
- Not to be alone
The need for protection and security remains until the end, as well as the desire to be touched and to be present. Some relatives are ready to take on this and accompany the dying person. In the home, you need a protected room with the possibility of staying overnight there. Nursing staff provide security through their presence and through their specialist knowledge.
However, some relatives are insecure and do not dare to do this. They need encouragement, guidance, and support. Hospice helpers offer support here. Still other relatives find it difficult to deal with death and parting. Sometimes there are too many unresolved conflicts. Relatives withdraw - that too demands respect.
Accompaniment to the very end cannot be managed on its own - you need a network of support and knowledge. More and more hospice services are training hospice helpers in dealing with dementia patients. The range of general outpatient palliative care is also being expanded. Teams come home and accompany and care for the sick. They advise relatives, help control symptoms and convey security.
Farewell culture using the example of home
Dying is part of everyday life for caregivers - for the dying person and their relatives it is a one-time process that is burned into the memory. It can be a time of special closeness for relatives and sometimes for caregivers. And sometimes - without many words - there is reconciliation. This takes preparation.
For the team in the nursing home, it requires dealing with dying and death and understanding how to deal with it - well in advance. A farewell culture that was developed jointly gives the dying, the relatives, but also the caregivers security and support.
- Inform relatives in good time: It is noted in the files which relatives should be called.
- Great importance is attached to good cooperation between the attending physician, nurses and relatives. Difficult decisions are made together in order to be able to correspond to the presumed will of the dying person as much as possible. Everyone in the team knows the living will - if one exists.
- The team has palliative knowledge and / or works closely with a palliative care specialist or a SAPV team (specialized outpatient palliative care). The teams accompany and support you in questions of pain treatment or in critical situations.
- Volunteer companions are included in good time to provide support if desired, e.g. when the night watch is alone.
- The needs of the dying are in the foreground. Basic care and storage are adapted to the situation.
- The nursing staff know about the existing or non-existent desire of the dying for religious rituals, such as receiving a sacrament or calling the imam. Spiritual experiences can provide comfort and security.
- After death, relatives have the opportunity to help wash and bed the deceased.
- Relatives, caregivers and all other companions have enough time to say goodbye.
- Relatives are offered an interview and counseling to appreciate the life and the time together that were spent together.
- A memorial service, a funeral book, or an obituary can give a good shape to the farewell and remembrance.
The last few days have been decisive and formative for relatives. They are remembered and final. They can be comforting or upsetting. It is therefore important that all those involved deal with it and help to shape the end of life in a dignified manner. It takes mutual respect and recognition - also from society.
German Alzheimer's Society V. Self-help dementia, Berlin
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