Frontotemporal degeneration (FTD) is a progressive neurodegenerative disease that will slowly worsen over time. The average lifespan is approximately 7-8 years from symptom onset, although this time varies considerably from person to person.
There are five stages associated with Frontotemporal degeneration (Piguet, Hornberger, Mioshi & Hodges, 2011). These stages can help caregivers understand what to expect and to plan for future needs of their loved one with FTD. The stages of disease progression are based on how much the person with FTD relies on another person for assistance with activities of daily living (e.g., bathing, dressing, etc.). In the mild stage, there may be no impairments in basic activities of daily living, but caregivers often see difficulty with more complex activities such as managing finances. In the moderate stage, the person with FTD develops more difficulty with activities and will need prompting to complete household chores and other activities. You may see a need for more supervision with things like dressing and bathing. In the two severe stages, more monitoring of the person with FTD is required. Often times, persons with FTD are unable to be alone because of the need for help with basic activities such as walking, eating and toileting. In the profound stage, the person is completely bedridden and needs 24 hour care.
The profound stage of FTD may last several months to a year. At this stage in the disease, there are several complications that may occur as a result of loss of function. It is important for caregivers to be aware of these complications and work closely with your health care team to manage these issues.
Changes in performing basic functions such as swallowing are associated with mortality in FTD. People with dysphagia (difficulty swallowing) are at risk for developing aspiration pneumonia. This occurs when food or drink gets into the lungs. The following interventions may be useful in managing dysphagia and reducing the risk of aspiration pneumonia. Have your loved one look straight ahead while eating and reduce distractions in the physical environment. Provide small portions and continually remind your loved one to eat slowly. If chewing becomes difficult, you may have to grind the food or use a thickener. Lastly, you may need to crush medications. Consult your health care provider or pharmacist to determine if crushing is appropriate. Also ask your provider or pharmacist if the medication is available in a liquid form.
Patients with FTD may have difficulty walking independently. Falls can occur for various reasons i.e. performing tasks while walking, loss of balance, visual limitations, rigid body posture and unsteady gait are common reasons for falls. Behavioral symptoms such as wandering and repetitive behavior are also associated with falls. Psychiatric symptoms such as hyperactivity, paranoia, delusions and hallucinations are also found to increase the risk for falls. Simple environmental modifications such as removing throw rugs or eliminating clutter on the floor can be helpful in reducing the risk of falls. Assistive devices such as a walker or cane may provide support for your loved one if they are unsteady on their feet. Pressure sores or decubitus ulcers can form when mobility is restricted. These sores are often a cause of restricted blood flow, especially among bed-ridden patients. Positioning is important for reducing the risk of pressure sore formation. Persons with restricted mobility should have their positions changed frequently. Pressure-distributing positioning aids such as foam mattresses or cushions may also be helpful in reducing the risk of pressure sore formation. Lastly, gentle range of motion exercises can promote blood flow and joint mobility.
There are many reasons for fecal and urinary incontinence. Some common reasons include apathy about self-care and cleanliness, confusion, restricted mobility, medications such as sedatives, diuretics and anticholinergic agents, and stool impaction. Strategies to maintain bowel and bladder function include using a clock to guide a toileting schedule. Limit the amount of liquids your loved one drinks in the evening and avoid caffeine products that increase the flow of urine. Have your loved one go to the bathroom before bedtime. If mobility issues or weakness make it difficult to use the toilet, use a bedside commode.
How to provide care for your loved one in the stages of advanced illness is a personal decision that can be very difficult to make. Each person will have unique needs that may require additional support in the home or residential care options such as a nursing home facility. Some caregivers utilize a specialized day program to provide a safe environment while they are at work. It is important to research your options in advance, learning all you can regarding the choices available. If possible, involve your family and friends before making the decision.