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Dealing With Dementia

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For caregivers: the challenges of end-stage dementia. Part 3 of 3.

Posted July 25, 2012

End-stage dementia is the last of the three stages of dementia. The challenges of this stage are dramatically different for the earlier stages. Many family caregivers are exhausted and often burned out from providing care at home when they get to this level of care.

The caregiving skills needed are dramatically different than the previous stages. At this stage of the disease, the former personality of the patient is simply no longer there. The mental capacities have remarkably deteriorated. The majority of brain cells in all areas of the brain have disintegrated. The death of these brain cells has a profoundly negative effect on the body and its organs.

Most problems in the early stages of the disease were mental, especially in terms of the memory. Now, at end-stage dementia, it will be the physical decline that will take most of the caregivers’ time. The negative and disruptive behaviors will decrease or be eliminated. At this stage, the body and mind are deteriorating and starting to fail. The individual affected by dementia can no longer control many bodily functions and requires total care.

The mental and emotional characteristics that were once the focus on care will now take a back seat. The challenges of providing physical care are now the priority. By this time, many family members decide placement outside the home is necessary.

Some family members feel that they want to continue to provide the care at home. Studies show that there is a better quality of care provided in the home setting. While it is possible to provide home care for someone at this late stage of dementia, it is really important that family caregivers understand that they will need added support. This support may come from family members, home health providers, and palliative and hospice care services.

End-stage dementia symptoms and problems can be a real challenge for caregivers. Arming yourself with knowledge about what to expect during any of the dementia stages will bring you some comfort and help you provide better care.

Individuals at this stage become startled easily by noises or even a person entering the room. Take time to introduce yourself every time you approach them and let them know who you are.

Maintaining weight is difficult at this stage. Swallowing difficulties may arise and there is an increase in the possibility of aspiration pneumonia. It is a good time to have a swallowing and feeding evaluation performed, and to become educated on feeding techniques to decrease the potential for this to occur. This is a time when getting them to eat anything for the calories is important. Oftentimes, sweet things such as custards, puddings, and ice cream are good choices.

There are new behaviors that may appear, such as holding onto something and not letting go of it. Unless this object will cause them harm, do not try and remove it. End-stage dementia patients lose the ability to control movements and may even develop habits of patting something repeatedly.

Many individuals develop a sensitivity to touch and may respond when touched by moaning or crying out loud. The response is an exaggerated response that they no longer have control over.

Skin care at his stage is very important, as there is a decrease in nutrition, fluid intake and activity. At the end-stage of dementia, the individual is mostly confined to bed, so complications such as infections, pneumonia, and pressure sores can occur.

Support services such as non-medical home health care and palliative and hospice services are needed at this time. Many question if hospice will hasten death. It does not. Hospice will allow you to provide the best quality of care and make your loved one as comfortable as possible. These services support the caregivers as they come to the end of their care-giving journey.

The challenges of providing care to those with end-stage dementia at home are possible to overcome. It is also important for a family caregiver to realize that they are not a failure if placement is necessary. The most important thing is that the individual with dementia receive the best care. It is difficult for many family caregivers to change from their full-time, caregiving role to that of an advocate. Many caregivers fail to realize advocating for quality care is just as important as being able to provide the care.

Diane Carbo, RN has over 35 years’ experience in a variety of nursing settings, including orthopedics/rehabilitation nursing, home care, discharge planning, case management, oncology, hospice, senior behavior health, assisted living, and long term care. Her passion is to help people plan for long-term care needs, and to that end started Her goal is to assist aging seniors and their families to develop plans that allow individuals to remain home, safely and comfortably, in the least restrictive environment, regardless of age, income or ability level.


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