The Challenges to the Caregiver When Dealing With End Stage Dementia

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 care giving skills needed are dramatically different than the previous stages. At this stage of the disease the former personality or the person that once was, is 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 profound negative affect 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.

More on caregivers and the challenges of dealing with end stage dementia at home

Late 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 preformed 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 are important. Often time, 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. They loose 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 them as comfortable as possible. These services support the caregivers as the 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 care giving 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 Registered Nurse has more than thirty five years in the nursing field. Her experience as a geriatric care manager, makes her uniquely qualified to help those who want to live out their lives in their own homes. That decision may be made when you are 20, 30, 40 or in fact at any age, with sooner rather than later being ideal. Diane has developed a web site to make people aware of issues and options. You will find extensive helpful information that will be continually updated. Please visit Diane’s web site and learn more about end stage dementia Sign up for “The Caring Advocate” her free newlsetter and take advantage of a complimentary e-course Advocating For Yourself and Others


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  • LAAAC is managed by St. Barnabas Senior Services; Funded, in part, by Archstone Foundation.
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