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It's only too easy to park someone who has dementia in front of a blaring television set. At the opposite extreme, it's possible to do too much for someone who has dementia. The key to good care is balance.

There's a lot about encouraging the fullest possible participation in daily activities of living for people who have dementia that's only common sense.

Here are some very basic reasons it is important to encourage people who have dementia to stay active:

  • Activity is tied to identity. Keeping up hobbies, social ties, team ties, and reminders of important life events helps people who have dementia remember who they are. It makes it easier for families to enjoy the time they have with them.
  • People who have dementia can still enjoy life. The ability to play an instrument or to pursue a craft or to keep up with a sport or a team does more than keep them occupied. It slows down the progress of their disease.
  • Simple, safe, and unhurried activities add the most to qualify of life. Caregivers learn what will improve quality of life without causing upset.
  • The more happy interactions caregivers have with people who have dementia, the less likely it is that they will try too hard. People who have dementia have trouble dealing with sensory input. You don't want too many people or too much sight and sound all at once. That's doesn't mean you can't be "colorful," either literally or figuratively. Just don't bombard the senses.

It is best to pursue 'just enough' care

People who have dementia have impairments in their abilities to keep up with activities of daily living. At the same time, they retain some of what experts call the instrumentalities of daily living, their abilities to take care of themselves. Conscientious care requires both doing things patients can't do for themselves and letting patients manage their own lives as much as possible. It's always a matter of doing enough but not too much.

So what's the right level of care?

  • Safety is always paramount. Intervention is sometimes to protect not just people who have dementia from themselves but also their families, fellow patients, and staff.
  • People who have dementia shouldn't be allowed to pursue activities that confuse or interfere with the care of people around them. 
  • Caregivers need to assess what their charges can still do and can't still do, and only provide help with what patients can't do.

Taking care of people who have dementia is a hard job. It is often easier and less time consuming to do something for a patient than it is to let them do it for themselves. But every caregiver needs to be able to honestly say at the end of a visit or a shift:

  • "I made sure to let them to do the things they could for themselves," and
  • "Even if they could only accomplish part of a task, I let them do that part."

The more severe the dementia, the more important it is to let patients do everything they can for themselves.

Sometimes people who have dementia are completely independent. Sometimes they only need encouragement or motivation. As people lose their abilities to perform activities of daily living, the progress of their disease is slowed down by just the right level of nursing attention.

Many experts recommend "minimal" nursing attention for people who have dementia. Minimal nursing attention, however, often requires a lot more time and effort than simply doing things for patients and getting the task over with. That's why nurses and patient care attendants need to recruit help when it's available. There are certain tasks that are usually not best left to family members or family members of the opposite sex, at least in American culture. Family members get very uncomfortable changing catheter collection bags, assisting with personal hygiene after using the toilet, and bathing. However, they may be helpful and welcomed by the patient to help with eating, facial care, hair care, and moving the patient to a sun room or activity center. 

This means that skilled nurses not only need to develop a rapport with patients, they also need to develop good relationships with families. On the other hand, families need to be supportive of personal caregivers. The place to vent frustration isn't with the nurse and it probably isn't with a floor supervisor. Before diving in to take care of a family member in nursing care, it is important for families and professional caregivers to:

  • Select activities for help. You don't want your helpfulness to interfere with the nurse's obligations to other patients.
  • Share information about the patient's abilities to do things on their own. You may have insight that the nurse hasn't had time to develop.
  • Help each other exercise reasonable levels of empathy and compassion. Sometimes family members need to hear that they are doing enough.
  • Figure out how to schedule and perform help together, and then being sure to keep your commitments, and
  • Practice kindness.
You won't always get it right. Neither will professional staff. But caring enough to let people who have dementia do what they can for themselves is priceless care.

  • Meyer K. Using Simulation to Enhance Care of Older Veterans. Fed Pract. 2018 Jun. 35(6):28-31.PMID: 30766362
  • Suzuki Y, Nagasawa A, Mochizuki H, Shimoda N. Effects on activities of daily living and instrumental activities of daily living independence in patients with Alzheimer's disease when the main nursing caregiver consciously provides only minimal nursing care. J Phys Ther Sci. 2019 Apr.31(4):398-402. doi: 10.1589/jpts.31.398. Epub 2019 Apr 1. PMID: 3103701.
  • Tappen RM: The effect of skill training on functional abilities of nursing home residents with dementia. Res Nurs Health, 1994, 17: 159–165.
  • Photo courtesy of SteadyHealth

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