By American Geriatrics Society (AGS)

Being the partner, friend, or relative of someone with dementia or Alzheimer’s disease (AD) often throws you into the role of caregiver. And the closer you are to the person, the more likely you are to be involved.

Here are ten tips for the novice caregiver to help make life not only as easy as possible but also fulfilling.

Make life as normal as possible for as long as possible

In the earlier stages of dementia, soon after someone has been given the diagnosis, she may well be able to continue doing all the things she’s done up to this point. She may still be able to go to work, drive a car safely, indulge in her hobbies, and get out and about with friends. As long as this is the case, encourage her to continue. You may need to give a bit of extra help here and there because of the early effects of dementia, but by and large, things will likely carry on for some time as they were.

Going about her usual life also helps keep your loved one’s spirits up after the diagnosis of dementia, which can be a crushing blow. So keep encouraging her to carry on normally as much as possible. Meanwhile, involve her in making decisions about the future for when her dementia progresses. Get her input while she can give it.

Encourage her to plan for the future

Although you don’t want the person you’re caring for to think the future is inevitably bleak, it’s a good idea to help her sort out the financial and legal issues that will ultimately affect her future while she still has the capacity to express her desires.

The most important issues are as follows:

  • Sorting out finances
  • Making a will
  • Setting up direct debits for auto-pay of bills
  • Applying for benefits
  • Establishing durable power of attorney: This point is of critical importance. People with a memory disorder must have someone to manage their affairs when they’re no longer able to do so. Two types of durable power of attorney exist:
    • Healthcare decisions
    • Finance management

You don’t need a lawyer to set up durable power of attorney; just download the forms from the Internet. Remember that these documents must be notarized in order to be valid. If it makes you more comfortable that all everything is legal, then you may choose to hire a lawyer to assist in the preparation of these documents.

Ensure that she remains healthy

People with dementia require attention to personal care (bathing and clean clothes), nutrition, and general health maintenance just like anyone else. However, as dementia progresses, you may need to prompt and assist the person whom you’re caring for to do these basics of daily life.

Encourage a healthful diet.

Encourage exercise.

In time, you may need to remind the person you’re caring for about basic hygiene. Attention to personal hygiene fades as all forms of dementia progress. Hence these basics of personal care will likely require more of your caregiving attention as time goes on.

Take her for health checks

Medicare provides for a free annual wellness visit. When someone you care for has dementia, you need to utilize this benefit for all it’s worth. After all, you don’t get much free these days, especially in healthcare.

Assist your loved one in scheduling regular visits to her primary care physician. Stick to the same doctor as much as possible to ensure continuity of care. If your loved one appears to have rapidly progressing confusion, agitated behavior, or lethargy, then get an appointment promptly to evaluate for an underlying medical problem. If her usual doctor isn’t available for such an urgent or unexpected visit, then get an appointment with a doctor or nurse practitioner in the same group so your loved one’s medical records are available for reference. Doing so helps to ensure appropriate and thoughtful medical care.

Other professionals who should be involved in monitoring your loved one’s health are the dentist, optometrist, podiatrist, and pharmacist. Finally, ensure the person is up-to-date with recommended vaccinations and screening checks such as mammograms.

Consider underlying reasons for changes in behavior

As dementia progresses, you’ll be presented with a variety of new challenges as your loved one loses cognitive function. However, if you notice a rapid change, such as new onset or escalating agitated behavior, don’t assume it simply results from a worsening of the memory disorder. A variety of reasons may explain the change, from constipation to urinary tract infections. As your loved one loses her ability to communicate effectively, new agitation or lethargy may be the only way she can express her symptoms or tells you she’s in pain.

If your loved one behaves differently for no obvious reason, bring her to see her primary care physician to check for underlying physical causes.

Accept professional help

As a friend or relative, you may think that all caring responsibilities for your loved one should fall on your shoulders. Many people feel guilty when they have to enlist outside help or place someone in an assisted living facility or nursing home, but that’s what professional caregivers are for. Think of it like this: Getting extra help relieves you of some pressure. It frees you to do more things with the person you’re caring for that you both enjoy.

So consider getting help with housecleaning rather than always doing the cleaning yourself. Order Meals on Wheels, rather than preparing food three times a day. Hire a handyman to do home adaptations rather than getting out your tools and trying to put up handrails in your spare time.

Continue to be involved when she enters residential care

You obviously don’t have to stay with your loved one for 24 hours a day at the assisted living facility or nursing home because that would defeat the entire purpose of her being cared for by someone else. Of course, helping your loved one become acclimated to her new surroundings by introducing her to the staff is important so the staff members get to know her quickly. Bring in some knickknacks from home to decorate her room to make it a more familiar setting.

You don’t have to visit daily but do visit regularly so the staff also gets to know you. Participate in social activities provided by the facility. Don’t forget to bring grandchildren to visit whenever possible. The presence of children in the facility cheers up everyone — residents and staff alike.

Think about end-of-life care

Experiencing a good death is as important as having a good life. With planning, your loved one’s passing is more likely to be peaceful. If she still has the capacity to make decisions, discuss her end-of-life wishes with her. If not, discuss these decisions with other family members, her doctor and the staff at the facility if that’s where she’s living.

A key issue that you need to consider is whether your loved one should be resuscitated if her heart stops or she stops breathing. Her primary care physician will be happy to discuss these matters with you and formalize them by defining her code status in the medical record.

In the advanced stages of dementia, hospice may be an option. To approve hospice services for your loved one, her physician must certify that her life expectancy is less than six months, based on her current medical status.

Look after yourself

Being a caregiver isn’t a 9-to-5 job; it is more like 24/7. Such responsibility can be physically, mentally, and emotionally stressful. Obviously, if you become ill or burnt out, you will be of no use whatsoever to your loved one. Like your loved one, you too should eat a healthful diet, get a good night’s sleep, exercise, drink sensibly if at all, and avoid smoking.

You need to schedule regular visits and preventive care with your family physician to maintain your own health. If you have ongoing medical problems such as diabetes or asthma, make sure you take your medication.

To cope with the emotional and psychological effects of caregiving, stay in touch with other family members and friends. Maintain open lines of communication so you have a support system when you need someone to talk because things are tough.

Take a break

Everyone needs a break sometimes, even caregivers. To cope with the demands of caring, make sure that you take time for you, such as regular evenings out relaxing with friends, weekend breaks, and holidays. If no one in your family or friends can take over from time to time, you can hire a paid caregiver to be with your loved one while you take a break for a few hours or days.

If you can’t find a paid caregiver to come to your home, you may have to arrange a respite care admission at your local assisted living facility or nursing home if you need an extended absence. Don’t feel guilty about taking time for yourself. Time out is essential to your physical and mental wellbeing and can help you to be a better caregiver in the long run.