05 Apr End of Life and Dementia
Can patients with dementia benefit from hospice?
A diagnosis of Alzheimer’s disease, Lewy body dementia or other progressive dementias can be difficult because of the continual decline. First the patient’s memory, and as time goes on, their physical capacity. It has often been thought that hospice is only for patients who have only one or two weeks to live, but it’s available to any patient, including those with dementia, with a six-month prognosis as determined by their doctor. The hospice care team can help patients with dementia remain comfortable and well cared for and help them remain at home with their families as long as possible. But there are some issues that are more unique to patients with dementia.
When should we think about hospice?
A six-month prognosis in dementia usually means that the disease is fairly advanced. But because dementia causes a progressive decline in memory and the ability to reason, the best time to make plans for end-of-life care is soon as possible after the diagnosis is made. Then the person’s family, physicians, or potential decision makers will know that person’s wishes well before they can no longer communicate effectively. Adding hospice to end-of-life plans will help ensure comfort and a better quality of life. Your doctor, healthcare provider and Auburn Crest Hospice can discuss the benefits of hospice care and help with advice about decision making.
But what if my loved one’s dementia is already advanced?
Having dementia does not always mean that a person in unable to consent to care. Someone needs to have the capacity to make decisions in order to consent. Their doctor can determine if a person has the ability to understand and consent to care, but an attorney that specializes in elder care can guide in determining their legal competency if needed. If your loved one has dementia, speak to them clearly and ask questions to make sure they understand. Write down what is said, and try to make sure that they pick someone to be their health care proxy, and ask them what kind of care they would want (for example if they would want a feeding tube if they could no longer eat). If a person does not have capacity to consent and has not chosen someone to make their healthcare decisions, spouses, children, or other family members can step in to make their healthcare decisions, including a request for hospice care. Your family member’s healthcare provider and/or attorney can help clarify who can make decisions if your loved one cannot.
Will hospice help with difficult behaviors?
Some patients with dementia may have additional difficulties adjusting to new people in the home or to a new place. Many experience frustration because of their increasing difficulty communicating their needs. They may not recognize family members and sometimes may not cooperate with care. One of the benefits of hospice is that care can take place in the home where patients are more familiar with their surroundings hospice nurses and certified nursing assistants are trained to help families manage and cope with some of the more difficult behaviors that your loved one may display. Hospice volunteers are available to share activities that have a calming effect, such as listening to music or looking at old photographs that remind patients of their family and friends, and favorite activities. Auburn Crest provides hospice care in the home and in their hospice centers if or when it is determined that inpatient care is needed.
How can our family of someone with dementia benefit from hospice?
As in all end-of-life conditions whole families can be affected by watching their loved one decline. But patients with dementia may eventually lose the ability to interact with or even remember their family. The main caregiver also bears a heavy burden because care giving can become more taxing over time. Studies by the National Alliance for Caregiving and the Alzheimer’s Association show that and many have had a decline in their own health because of caregiving duties. Hospice can support families and caregivers by providing social workers that can help the family and main caregiver find the help they need to maintain their own health. Dietitian support, chaplains, and therapist are also on hand to help ease caregiver burden. Hospice care also includes bereavement support after a patient has passed away.
Hospice care is one of the best choices patients with dementia and their family members can make to ensure comfort, and better quality of life as they approach end-of-life. Talk to your healthcare provider or contact Auburn Crest Hospice for further information.