Caregiving During the Mid-to-Late Stages of Alzheimer’s and Dementia

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The middle stages of Alzheimer’s or dementia can be the most challenging time for a caregiver—your loved one is losing more and more memory and cognitive function, which can lead to some challenging behaviors, yet may still be aware enough to be depressed and angry about his or her condition. In the earlier stages, they may have been able to live on her own, with occasional help shopping and paying bills, but now requires more constant, or even full-time, care. At this stage, you should also be making plans for care during the later stages, when your loved one will need assistance with even the most basic life skills such as eating and walking, and will need full-time nursing or live-in care.

The first thing to do is to assess both needs and resources of the person with Alzheimer’s or dementia, says Amy Goyer, family and caregiving expert for AARP and author of Juggling Life, Work and Caregiving. There are a lot of things to consider, such as:

  • The finances. This will include long-term-care insurance, private health insurance, Medicaid, income from social security and pensions, and savings. If there are gaps between how much money they have and how much you need to spend for care, what kind of help can you expect from family members? Talking to a financial counselor can help you sort out the details.
  • The location. If your loved one is still living in his or her own home, can they stay there long-term? Are there stairs that will become too difficult to manage? Is there an extra bedroom for live-in help? Is it located near adult day care or other resources? Will it be too isolated when they are no longer driving? Could they sell the home and use the proceeds to pay for assisted living or a smaller apartment with live-in care?

You also need to assess your own needs and resources, says Goyer. Does your work schedule allow you to have the flexibility to care for your relative? Do you have young children or a spouse you are also caring for? What will your financial contribution be to your loved one’s care? Are you emotionally and physically prepared for the challenge of more full-time care?

Once you’ve come up with a solid idea of everyone’s needs and resources, you should start looking as soon as possible at all the options available, says Nataly Rubinstein, LCSW, founder of Alzheimer’s Care Consultants and author of Alzheimer’s Disease and Other Dementias—The Caregiver’s Complete Survival Guide. “Ideally, you should have toured facilities long before it’s time to make that move, so you don’t feel you are rushed into choosing what happens to have an availability at the moment you need it,” she says. Sometimes, however, changes need to be made sooner than you had planned. For example, if there is an injury and the person your caring for needs to go to rehab, they may need to go straight into nursing care afterwards, Rubinstein says.

If you decide that your loved one needs more full-time care than you can provide in his or her home or in your own, options include:

Memory-care unit of an assisted living facility. This option is best for those who are still able to live somewhat independently, but need some help with daily living activities, such as housekeeping, bathing, dressing, and medication management. In assisted living, residents have their own living space, but eat communally; nursing care and other supportive services are on-site and available at all times. Memory care units, however, differ from regular assisted living facilities in that they are often locked or have other security features to prevent wandering. They also have staff who are specifically trained in dementia care. “It’s best to move into assisted living when you are still capable of enjoying the social aspect and taking part in the activities,” says Rubinstein. (Related: Checklist: Questions to Ask a Memory Care Facility.)

Nursing homes for Alzheimer’s or dementia. For those with dementia who need around-the-clock care, nursing homes provide full-time help with everything from feeding and toileting to physical and speech therapy, and any medical needs. Unlike assisted living, nursing-home costs may be covered by Medicaid.

Live-in help. For those who want to remain in the familiarity and comfort of their own home, a full-time, live-in home aide can provide a range of services, from preparing meals and doing laundry, to administering medication and helping with all aspects of daily living—as well as companionship and social stimulation. You can find a qualified caregiver through an agency, online listings, or by word-of-mouth. A well-trained aide with experience in dementia care should be able to put together a care plan that takes into account the likes and dislikes of the person with Alzheimer’s or dementia and provides them with enough stimulation and activities.

Hospice care for Alzheimer’s and dementia. At the very final stages of Alzheimer’s, you may turn to hospice care, which is meant to manage pain and other symptoms during the last six months of life. This type of care typically provides comfort for the patient, and respite for the family.

Whatever plans you make for the middle and late stages of Alzheimer’s and dementia, it is important to remain flexible, and to keep in mind that your best-laid plans may need to be upended. “It’s impossible to say for certain, ‘In two years we’ll do this, and then two years after that we’ll do that,”says Goyer. “You have to constantly re-evaluate what their needs are: If their mobility changes, their dementia gets worse, their partner dies, or the financial situation changes, you may need to re-evaluate what makes the most sense for both of you.”

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