Dementia Aware: what you need to know about caring for someone in the final stage of dementia
Research indicates, that following diagnosis, the average life expectancy of a person living with dementia is approximately five to ten years depending on the type and severity of the dementia. Over time, the person with dementia will experience a gradual decline in their ability to perform everyday functions and become more dependent on others to care for, and to provide the essential necessities of life e.g. food, fluids.
Our job as human beings is to preserve the person with dementia’s quality of life until the end as best we can (Whitehouse, 2006).
Final Stage of Dementia
In the third and final stage of dementia (also known as late stage, advanced, or end stage), cognitive functioning is grossly impaired and symptoms are usually severe. The person with dementia will likely have difficulty with:
- all aspects of personal care
- eating and drinking
- may be incontinent of urine and stool
- mobility, including sitting up in a chair, some may even be bedbound
- unpredictable mood swings and strange behaviours
- recognizing familiar objects e.g. chair, cup
- remembering occurrences e.g. meals, family visits
Nursing Home Care
The person with dementia will require total care 24 hours a day, every day. The pressure of caring for a person with dementia is exhausting, and can result in sleep deprivation, disrupted eating, increased stress, muscoskeletal injury, and can severely compromise the caregiver’s emotional health and wellbeing. Unfortunately, many older people dread being ‘put away’ and caregivers and families often carry on caring for the person with dementia in the face of enormous difficulties to avoid placement in a home.
However, sooner or later, every caregiver of a person living with dementia faces the gut-wrenching question: should I put my loved one in a nursing home? Such a move may not necessarily be what the person with dementia or caregiver wants, but one of necessity and safety. Reasons may include:
- Up all night
- Leaving the home at all hours and becomes lost
- Frequent falls
- Faecal incontinence
- Escalating health needs (person and/or caregiver)
- Difficult or unsafe behaviours
- Appropriate care from family or within the community may not be available long-term
- Private care is too expensive
- You are alone
Firstly, let’s start by saying, it is not your fault; do not blame yourself. Even if you made a promise that you would never put your loved one in a nursing home, imagine for a moment, that he/she could have foreseen the future and the challenges you face. Ask yourself, would he/she still expect you to continue? I imagine the answer would be no!
Yes, the move will be heartbreaking and very difficult, but you can still help the person with dementia to maintain his/her identity, enhance self esteem, independence and quality of life in his/her new home.
End of Life Care
Facing and experiencing dying are inevitable for people diagnosed with dementia. Whilst dementia does not cause death directly, an increased vulnerability makes death by other causes more likely. For example, 50 per cent of people with dementia die of a respiratory illness (pneumonia), whilst cardiovascular related deaths are higher in people with vascular dementia.
One of the most difficult problems for caregivers and families are decisions they must make at the end of the person with dementia’s life. If the person with dementia has already completed an advance care plan (representation agreement/advance directive) then his/her wishes will be followed. However, if there is no advance care plan, then a temporary substitute decision maker will be appointed to make healthcare decisions for the person.
In the very end stages of dementia, the person may be unable to swallow, lose the ability to speak including a loss of facial expression, no longer recognize loved ones, or may be unconscious. During this time, it is essential that pain and symptoms are managed, and psychosocial and spiritual support is provided to the person with dementia, caregiver/family. Ensuring the practice of the person’s faith is supported can help maintain the person’s dignity and selfhood, and be of great comfort to caregiver and family. Recognizing a person’s spirituality is a way of recognizing the person’s true individuality in a manner that can be sustaining and supportive (Hughes, 2011).
Transfer to hospital and the associated risks and benefits should be considered prudently in relation to the person’s prognosis. Similarly, transfer to Hospice is not usually required if the person is in a care home as staff are trained to provide end of life care.
When the person with dementia dies, there is a mixture of relief, sadness, grief and regret. Sadly, for the caregiver, he/she must now complete the final phase in the dementia journey, the bereavement stage alone. Some caregivers find that they have grieved the loss of the person with dementia for so long, that they don’t have strong feelings of grief upon death. However, others will experience a range of emotions including depression, numbness, shock, feelings of isolation and loneliness and even a loss of identity and purpose in life. Whilst these feelings are a ‘normal’ part of the grieving/bereavement process, it is important that caregivers not withdraw and isolate themselves from friends and family. Talk to your doctor, a grief counsellor, your religious/spiritual advisor or contact:
- C. Bereavement Helpline at 1-877-779-2223
- newhopegrief.org offers information about counselling, workshops and support groups for adults, children and families
- MyGrief.ca developed by families and grief experts
