End stage dementia: Letting go without giving up

Overview

The booklet is aimed at carers who want to continue their involvement in the lives of the people they have cared for, even if they are no longer responsible for their day-to-day physical care needs.

The idea for Letting Go Without Giving Up grew from concerns expressed by carers who felt they were no longer allowed to have a role in caring for the person they had looked after at home after the person entered long-stay care. The booklet is aimed at carers who want to continue their involvement in the lives of the people they have cared for, even if they are no longer responsible for their day-to-day physical care needs.

The booklet will also be of value to care home staff as it explains the benefits and ways of involving relatives and friends in the continuing care of the person with dementia. If you work in a long-stay care setting, you may also want to read Working with Dementia: a handbook for care staff (MacKinlay, 2004). This short booklet, written by a carer, describes how dementia affects the individual with the illness and asks care staff to try to understand how the new resident and the carer/relative might be feeling around the time the resident is admitted. It also describes the behavioural and communication difficulties that may occur and how staff can develop strategies to deal with these issues.

Some readers will want to read Letting Go from cover-to-cover while others may want to refer to particular chapters or sections as issues arise. We have tried to include as many practical tips and suggestions as possible, based on the experiences of current and former carers.

When a person with dementia goes into a residential setting, he or she is entering a different stage of the illness which will mean changes for both the person with dementia and the carer. While dementia is a terminal illness, it is an unpredictable condition and there is no fixed pattern as to how the illness will progress. However, although no-one has the same journey or path through dementia, there are common features to the journey which it may help carers to understand and prepare for. These are set out in later sections. Anyone wanting to know more about how the illness may progress in their relative should consult the person's GP in the first instance.

The booklet also looks at: the emotional impact on the carer of making the decision to place the person in a care home; the effect of the move on the person with dementia; helping care home staff to understand the person; making visiting more pleasurable; communicating, both with the person and care home staff; coping with difficult behaviour; and preparing for the end of the person's life.

Even if the illness cannot be cured, we can still aim to provide the best quality of life for the person throughout this last phase of the disease. That aim underpins the following sections of this booklet.

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