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In a situation where the kind of care changes because the symptoms change frequently, it helps family members and caregivers know what to expect as the disease progresses. While casual supervision at home may be all a dementia patient needs in the early stages of Alzheimer’s, later stages will require more dedicated care or even moving the patient to a different facility so that specialized, more targeted care can be provided.

Early Stages

Most Alzheimer’s and other dementia patients can be cared for at home by family members or friends in the early stages of the disease. They may need reminding about taking medication, or preparing meals, or putting dishes in the dishwasher, or paying bills, or taking the dog for a walk, but they can usually function properly at home.

As the disease progresses, caregivers may notice the patient forgetting names, phone numbers, or appointments. They may forget how to do certain tasks, including putting on clothes correctly, where they last put a book or the newspaper, or what they did yesterday. At this point, the caregiver can still provide the needed care without much training. They may become more argumentative, more insistent about what year or day it is, or more critical of those usually considered family or friends. Caregivers need to learn never to criticize or correct, never to argue, and never to ask why the patient doesn’t remember, but to distract the patient, change the subject, or agree even if the patient’s memory is wrong. The caregiver has to learn to be with the patient wherever and whenever he/she is, even if that’s back in high school 40 years ago.

It is important that the caregiver or a trusted family member accompany the patient to doctor or specialist appointments during this period, because the patient may forget things like recommended changes in prescribed medicines, recommended activities, or other important details. It also gives the caregiver an opportunity to raise questions about changes in behaviors such as sleeping or eating.

Mid Stages

There Is no clear distinction between stages in any of the dementias, but it will be obvious to anyone taking care of a dementia patient when the person’s ability to do certain things has diminished. The change may not be immediate, and may change from day to day, but over several weeks the change will become more obvious.

One of the more difficult behavior changes is when the patient starts calling the caregiver ugly names or starts physically resisting the caregiver’s efforts to provide care, such as getting out of bed, getting dressed, going to the bathroom, or going for a walk. Some patients will fiercely demand to do these things themselves without help, or insist that you’re doing them wrong, or even refuse to do them. This may look like childish tantrums, but in fact it’s a reflection of nerve damage to the portions of the patient’s brain that controls various functions, including memory, emotion, problem solving, and identity. It’s important that the caregiver remain calm, speak in a calm and quiet manner, respect the patient’s confusion, and maintain safety for both patient and caregiver.

During this stage, the patient’s needs may require more care than an unpaid family caregiver or friend can provide. Hiring a caregiver can be expensive, but there are alternatives available, especially if you meet low income conditions. Home care agencies generally place caregivers who have some training and experience, but you should expect a paid caregiver to be available on a regular basis, sometimes to be able to transport the patient to doctor appointments and other scheduled events, and to handle light housekeeping and meal preparation. Some paid caregivers will do grocery shopping and other household tasks if negotiated in advance.

Where possible, the family member responsible for the patient should consider part time participation in an Adult Day Care program, usually offered via the local state or county organizations, but sometimes by cultural or language associations. These programs usually run from 9 or 10 a.m. to 3 or 4 p.m., include snacks and lunch, arts and crafts, discussions, programs involving visits from children, animals, or local figures, music, physical movement, and free time, plus care activities by trained caregivers. Some programs provide transportation to and from the program. These programs are not free, however, although sometimes scholarships are available.

A word should be mentioned here about caregiver exhaustion. Taking care of a dementia patient full time, especially in mid stage or later, can result in wearing down the caregiver to the point where he/she gets sick. Especially if the caregiver is unpaid, the demands of caregiving can be so emotionally draining that the caregiver needs some respite – time off to see their own doctor, run errands, get a haircut, have lunch with a friend, read a book, or just take a nap. Adult day care programs, even if attended a couple of days a week, can provide this kind of respite. So can scheduling alternate caregivers for different days or portions of the days.

Later Stages

The later stages of Alzheimer’s or the other dementias can be very difficult physically, emotionally, and financially. Patients can need help getting from a chair to bed or vice versa, getting to and from the bathroom, controlling their bladder or bowels, feeding themselves, knowing what time of day it is, recognizing family or friends or even daily caregivers, understanding where they are, and even communicating what they want. Physical aggression can get worse or they can prefer to lie in bed all day. Caregiving responsibilities increase both in number and type of activity needed.

Sometimes this is a stage where passive entertainment, such as watching favorite programs on TV, fidgeting with large piece picture puzzles, or playing simple games, is what the patient prefers. Patients may sleep more, or they may be awake and needing attention in the middle of the night. Caregivers need to be aware of what the patient is doing because this is a period where accidental falls can require immediate medical attention. Other sudden changes in a patient’s functional abilities can require immediate need of an ambulance.

Because the needs of the patient demand so much of family caregivers, many families choose to move the patient to a long term care facility, nursing home, or memory care facility. These facilities are a bit like a combination of a dormitory, apartment building, and hospital: usually a patient gets his/her own room or shares a room with another patient, has nursing services, meals, laundry, and group entertainment provided, and welcomes visits by family and friends within specified visiting hours. However monthly costs associated with long term care facilities can be steep; Medicare doesn’t pay for most long term care services, Medicaid does under limited conditions, and long term care insurance pays for most of these costs. However, most families need to pay the costs out of pocket or from private assets or other forms of insurance.

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Our certified care management professionals are experienced in managing transitions between various therapy, medical, and activity programs, visiting specialists, family occasions, and emergency actions.

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