Dementia is a progressive illness for which there is currently no cure. Each person stricken with dementia will experience the disease differently, meaning it is impossible to predict precisely how an individual’s dementia will progress. It is also impossible to predict how long a person will survive when in the throes of end-stage dementia.

Commonalities in End-Stage Dementia

The term “dementia” actually refers to a category of diseases, each causing memory loss and deterioration of mental and physical functions. It is a result of physical changes in the brain, and it grows worse over time. The symptoms may progress rapidly, or it can take years to reach end-stage conditions. The course of the progression is dependent on the underlying cause of dementia.

• Everyone affected by dementia experiences the stages differently, but most will share some symptoms.
• Progressive loss of memory with associated decline in mental functions
• Gradual loss of effective communication
• Ability to execute activities of daily living progressively declines
• Ability to meet personal care needs gradually diminishes
• Progressive inability to interact on personal and social level
• Ability to safely live independently progressively falls

Persons stricken with dementia progress through the stages, from mild to end-stage, at differing rates but invariably follow a similar path. Dementia begins with impaired memory and personality changes and progresses to an inability to recognise familiar places and objects. In moderate stages, confusion, agitation, insomnia and difficulty communicating are all usually present.
In the terminal end-stage, individuals may become mute, become confined to bed, incontinent of urine and bowels, unable to swallow and exhibit increased susceptibility to infections such as pneumonia.

Aggressive Care or Palliative Care?

A loved one who begins to show signs of mental decline warrants an evaluation by a physician or nurse practitioner. Some cases of confusion and memory loss can result from medical problems, such as medication incompatibility, and are treatable. A medical professional can do some simple screening for dementia.

Certain medications exist to treat dementia, but they are not a cure. Planning for the end-stages of dementia should begin with the initial diagnosis. This is the time when the individual can give input into the plan for his or her end-stage care. A decision regarding which course of treatment the person wants to pursue – aggressive care or palliative care – is necessary.

Aggressive care pulls out all the stops when it comes to prolonging life. This can include multiple hospitalisations as the disease progresses, interventions such as feeding tubes or respiratory assistance, physical therapies, and custodial care in a skilled nursing facility.

Palliative care takes a multidisciplinary approach to caring for the person with end-stage dementia. It focuses on relief of symptoms, such as pain and physical and mental stress. Palliative care usually involves home health services and hospice care.

Calling in Hospice Care

Hospice care traditionally focuses on providing comfort in the final stages of a terminally ill person’s life, rather than life-prolonging treatments. A family or responsible caregiver can request hospice services or home health care at any time but should be sure to check with the individual’s medical insurance provider beforehand to determine coverage eligibility.

A physician will suggest hospice care when he or she feels the dementia patient is likely to live six more months or less. This arbitrary timetable is a Medicare requirement regarding the introduction of hospice care into a terminal dementia patient’s treatment regimen. Most insurances will require a physician referral. Hospice services can also begin on a self-referral basis through local free-standing hospice programs.

By adding hospice services to the treatment of end-stage dementia, the individual and his or her family gains access to essential services, not the least of which is pain management. Hospice in general works on an underlying philosophy that focuses on the dignity of the individual and providing quality comfort to all involved.

Hospice provides care and comfort not just to the individual, but also to the family, friends and caregivers of those with terminal illnesses. The core goal of hospice care is to avoid hospitalisations. In most cases, hospice services are available even if the individual must enter a long-term nursing facility.

Hospice also provides social services support and bereavement support that families would not receive from hospitals or nursing homes. Counseling services about the spiritual and emotional impact of end-of-life care are available, along with respite care to give caregivers some much-needed relief.

End-Stage Dementia Is Difficult

Whether caused by diseases such as Alzheimer’s or Parkinson’s, or some other condition, the terminal stage of dementia is a struggle for everyone. The best way to battle the difficulties that will eventually come with a diagnosis of dementia is by preparing in advance.

Once diagnosed, and as soon as the individual is ready, there should be a discussion of his or her wishes on advanced medical procedures, such as feeding tubes. An Advance Directive (a.k.a. Living Will and Durable Healthcare Power of Attorney) crafted early in the dementia developmental process allows the individual to control his or her outcome while remaining legally competent to participate in these decisions.

Without an Advanced Directive of some sort in place, decisions about the individual’s care will fall to the next-of-kin. Understanding the harsh reality that will come with the progression of dementia, and preparing appropriately for it, can make the end-of-life challenges much more manageable for loved ones and their caregivers to meet.