What to expect as the person’s dementia progresses
Caring for someone with dementia can be a great reward but it can be challenging at times. Prepare yourself by knowing what to expect.
Making medical decisions for people with dementia
With dementia, a person’s body may continue to be physically healthy. However, dementia causes the gradual loss of thinking, remembering, and reasoning abilities, which means that people with dementia at the end of life may no longer be able to make or communicate choices about their health care. If there are no advance care planning documents in place and the family does not know the person’s wishes, caregivers may need to make difficult decisions on behalf of their loved one about care and treatment approaches.
When making health care decisions for someone with dementia, it’s important to consider the person’s quality of life. For example, medications are available that may delay or keep symptoms from getting worse for a limited time. Medications also may help control some behavioral symptoms in people with mild-to-moderate Alzheimer’s or a related dementia. However, some caregivers might not want drugs prescribed for people in the later stages of these diseases if the side effects outweigh the benefits.
It is important to consider the goals of care and weigh the benefits, risks, and side effects of any treatment. You may need to make a treatment decision based on the person’s comfort rather than trying to extend their life or maintain their abilities for longer.
The progression and stages of dementia
Dementia is progressive. This means symptoms may be relatively mild at first but they get worse with time. Dementia affects everyone differently, however it can be helpful to think of dementia progressing in ‘three stages’.
Why is dementia progressive?
Dementia is not a single condition. It is caused by different physical diseases of the brain, for example Alzheimer’s disease, vascular dementia, DLB and FTD.
In the early stage of all types of dementia only a small part of the brain is damaged. In this stage, a person has fewer symptoms as only the abilities that depend on the damaged part of the brain are affected. These early symptoms are usually relatively minor. This is why ‘mild’ dementia is used as an alternative term for the early stage.
Each type of dementia affects a different area of the brain in the early stages. This is why symptoms vary between the different types. For example, memory loss is common in early-stage Alzheimer’s but is very uncommon in early-stage FTD.
As dementia progresses into the middle and later stages, the symptoms of the different dementia types tend to become more similar. This is because more of the brain is affected as dementia progresses.
Over time, the disease causing the dementia spreads to other parts of the brain. This leads to more symptoms because more of the brain is unable to work properly. At the same time, already-damaged areas of the brain become even more affected, causing symptoms the person already has to get worse.
Eventually most parts of the brain are badly damaged by the disease. This causes major changes in all aspects of memory, thinking, language, emotions and behaviour, as well as physical problems.
What are Specific Care Needs at Each Stage?
An individual may not require care assistance after the initial diagnosis of dementia, but that will change as the disease progresses and symptoms become worse. There are about 16 million unpaid caregivers of people with dementia in the United States. While many caregivers are providing daily help for family members, they also hire someone to help. There are many options of care assistance, such as in-home care adult day care nursing home care . There is also financial assistance Early Stage Dementia As mentioned above, in the early stage of dementia a person can function rather independently and requires little care assistance. Simple reminders of appointments and names of people may be needed. Caregivers can also assist with coping strategies to help loved ones remain as independent as possible, such as writing out a daily to-do list and a schedule for taking medications. Safety should always be considered, and if any tasks cannot be performed safely alone, supervision and assistance should be provided. During this period of dementia, it’s a good idea for caregivers and loved ones to discuss the future. For example, a long-term care plan should be made and financial and legal matters put in place.
Middle Stage Dementia In the middle stage of dementia, an individual loses some independence. Assistance with activities of daily living, such as bathing grooming, and dressing is often required. Initially, an individual may only need prompts or cues to perform these tasks, such as reminders to shower or having clothes laid out on the bed. However, at some point more hands-on assistance will be required. Establishing a routine becomes important, and caregivers need to exercise patience. Since individuals in this stage of dementia have greater difficulty communicating , caregivers need to talk slowly, clearly, and use non-verbal communication. Individuals will no longer be able to drive, so transportation will be required. It is also in this stage of dementia when it becomes unsafe to leave the individual alone, which means supervision is necessary.
Late Stage Dementia A person in this last stage of dementia requires a significant amount of care. Assistance and supervision is required 24 hours per day. Dementia patients may require assistance getting in and out of bed, moving from the bed to a chair, or may be bedridden and require help changing positions to avoid bedsores. Swallowing becomes an issue in late-stage dementia, and caregivers have to make sure food is cut into small pieces, is soft (like yogurt and applesauce), or is pureed. At some point, the individual will be 100% dependent on their caregiver and will no longer be able to complete any daily living activities alone. Not all families are equipped to offer this level of care. As mentioned previously, there are other options for care , such as hiring a part time caregiver or moving your loved one to a nursing home.
For more information on caring for individuals with dementia, click here . It’s important to remember, providing care for a loved one can be stressful, and self-care is a must.
Taking care of yourself
Despite your best efforts, caring for someone with dementia becomes harder as the disease moves on, and the person you are caring for becomes more dependent on you. This is a time when many family members need more support for themselves. The following tips are to help family members take care of themselves and plan for the future.
Avoid isolation and loneliness by keeping up with social activities and contact with others as much as possible.
Take care of your own health.
Join a caregiver support groupto connect with others living with the day-to-day issues of Alzheimer’s disease and facing practical challenges, grief and loss.
Watch for signs of stress and how it can affect your health and ability to provide care.
Be aware that you may already be grieving the gradual losses caused by the disease.
Seek professional help if feelings of depression or anxiety are overwhelming.
Be flexible about routines and expectations.
Try to be positive and use humour as a part of care strategies.
Make time for yourself by using respite care options, including adult day programs, professional homecare services, other family members or friends, volunteer caregivers and friendly visiting programs.