Caring for Someone with Alzheimer’s

Meal Time

NOTE: Because there is no true “treatment” or cure for Alzheimer’s, caring for someone with the disease is ultimately a matter of providing comfort and assurance. Over the past two decades of specializing in such care, our family has gained valuable insights into minimizing the effects of Alzheimer’s and creating an environment that affords the highest quality of life in these unique circumstances.

As discussed in a previous update, people with Alzheimer’s start their day with far less mental capacity and energy than those without the disease. Consequently, the functioning level necessary to partake in a meal can rapidly decline as the day wears on. In our homes we make lunch the largest meal of the day, and dinner a simpler affair.

To facilitate eating, especially at dinner, you might want to substitute finger foods for full course meals, or offer one item at a time. Confronted with a full plate of food, people with Alzheimer’s can be overwhelmed – they simply don’t know where to start. But by providing them three separate items in smaller portions, each on its own plate, you allow them to focus. As a result they are much more likely to finish more of their meal.

Physical Comfort

NOTE: Over the past two decades of caring for people with Alzheimer’s, our family has gained valuable insights into minimizing the effects of the disease in an effort to provide the highest quality of life for those affected. However, every situation is unique. The relevance of any observations or suggestions offered here will vary by individual.

Decreased blood circulation is common among older people, making them generally more sensitive to cooler temperatures. But for someone with Alzheimer’s, this effect is severely magnified. Dementia has damaged the portion of their brain (the hypothalamus) which controls a variety of functions including their body’s thermostat. So in a room that feels “comfortable” to us, someone with Alzheimer’s may be freezing. Obviously this can impact activities such as dressing and bathing as well. Particular care should be taken that room temperatures and water temperatures of a bath or shower are not discomforting. Some people with the disease also develop extreme sensitivity of the skin. The pressure of water swirling around them in a tub or hitting them from above in a shower can be a very tactile and painful experience. The issue may be resolved by using a shower wand where the flow and movement can be controlled.

Reality Orientation

People with Alzheimer’s are confused. They will ask a question, hear the answer, then ask the same question again. And again. This repeated questioning demands patience and understanding on the part of caregivers. “Today is Sunday isn’t it?” You may have answered this a dozen times, but they don’t remember. Or understand. In the early stages of dementia, we use Reality Orientation to reassure them. By patiently and truthfully answering the question each time, we can temporarily clear up their confusion and ease their anxiety. But as the disease progresses, Reality Orientation becomes counter-productive as any attempt to “clear things up” results in further anxiety or confusion. We then switch to a technique called Validation Therapy, which will be covered in tomorrow’s update.

Validation Therapy

Alzheimer’s robs people of their understanding. They lose the ability to distinguish between past and present, real and unreal. And as their disease progresses, our desire to help them understand may only add to their anxiety. When facts differ from what they “know,” frustration and anger can result. Here is where we switch from Reality Orientation (which I discussed in yesterday’s update) to Validation Therapy. Validation Therapy is simply that, validating “their reality.” For example, if they persist in seeking their Mother (long-since passed), instead of arguing we shift the conversation to their underlying feelings. “Your Mother was very caring, wasn’t she?” “Was she a good cook?” “Did she have a garden?” By responding in this way we keep the episode positive by focusing on the “feelings” they have for those still living in their memories.

Home for the Holidays

If you’re considering bringing a loved one with Alzheimer’s home during the holidays, here are a few things to consider. First and foremost, plan ahead. Allow extra time for everything and try to adapt your plans to their routine as much as possible. Give their care staff several days’ advance notice so they have time to prepare medications and clothing. Provide a quiet place where your loved one can rest when necessary. Rather than an extended stay or even a daylong visit, consider limiting their visit to just an hour or two – perhaps for lunch. Be aware of their diet and restrictions. During their visit, reminisce about the past, play holiday music of their era, watch home movies or view family pictures – anything that may comfort them. And above all, don’t use your precious time together to try to “set the record straight” if their reality differs from yours. Recognize that your reality, and perhaps even members of your family, may be unfamiliar to them now. While the holidays can be challenging for you, they can be overwhelming for someone with Alzheimer’s.

Holiday Travel

I would suggest that families think hard before making any travel plans that include a loved one with dementia. Their condition may make extended travel impractical or at least unadvisable. Families should never let a loved one with Alzheimer’s travel alone. Crowded transportation terminals can pose a special threat for someone who is already disoriented. The peace of mind that an accompanying personal care assistant or home health aid can provide is well worth the cost. If you’re staying in a hotel with someone who has Alzheimer’s, be mindful of the dangers posed by balconies, stairways, tightly arranged furniture, extreme bathwater temperatures, and other unfamiliar aspects of your surroundings. One final note of caution: for individuals who exhibit certain behaviors, travel should be discouraged all together. These would include consistent disorientation or agitation in their already familiar settings; wanting to go home during short visits away; delusional, paranoid, aggressive or uninhibited behavior; incontinence; anxious or fearful behavior in crowds; and wandering.

Holiday Safety

A more frenzied pace, bustling crowds, a schedule that is anything but routine – these are signs of the holidays. These are also someone with Alzheimer’s worst nightmare. That’s why it’s important to take special precautions if your holiday activities involve caring for a loved one with the disease. If they are accompanying you shopping, go during hours when the stores are less crowded. Consider smaller, out-of-the-way shops rather than busy malls. Never leave your loved one alone in the car, or unattended waiting somewhere for your return.

If you cannot have them with you at all times, arrange for someone else to stay with them while you shop. If you are having them help with your holiday preparations at home, monitor their kitchen activities. Keep sharp knives and other potential risks out of their reach. Remove decorations or obstacles that might cause a fall in halls and pathways. Be sure to check the microwave, dishwasher and trash cans after their visit to prevent any unpleasant – or even dangerous – surprises.

Holiday Gatherings

The holidays can be stressful for anyone, but they pose special challenges for people suffering with Alzheimer’s. The disorientation and sense of confusion that accompany the disease can make holidays together difficult. While a loved one with Alzheimer’s may find joy in helping with holiday preparations, it is important to consider their limitations. Invite them to join in simple traditions – perhaps decorating or baking, making pudding, stuffing stockings. But remember, just one thing at a time.

If family members are planning to visit, keep in mind that small groups are preferable to large gatherings. Ask guests to call ahead to determine the best time to visit, and let your loved one know in advance who is coming. Encourage visitors to reintroduce themselves if necessary, in a casual, comfortable manner.

As odd as it may seem, consider having everyone wear name tags. This can help with recognition and relieve the stress your loved may feel trying to recall names.

Please support our local Alzheimer’s Association at 316-267-7333.