This could be considered an existential question, but if you have been reading our articles regularly, you know we are committed to helping older people, not philosophical questions. In today’s column I am particularly concerned with how family care givers of older people with dementia can continue that caring role after the older person is admitted to a care facility. I have talked with family caregivers who felt that, since the care facility employed professional caregivers, there was nothing for them to do. Actually, nothing could be farther from the truth. As the older person’s brain deteriorates from the effects of the particular disease causing dementia, that individual is no longer able to help the staff understand who he or she is. Yet this information is vital for the staff of the care facility to be able to provide the best care for that individual. Here is where you, as the family caregiver, can help the staff understand who your loved one is. I feel it is best to have this information written down so it can be passed from one staff shift to another, and any newly employed caregivers can read it. The information can be presented in either a narrative or an outline format. However you decide to present it, let me suggest five areas that you will want to cover.
1. Childhood – Often as dementia progresses people regress to their childhood, so it is good for the staff to know something about the person’s childhood. This can help the staff relate to your loved one in a reassuring manner. Some of the information you want to include is where your loved one grew up; information about siblings, parents, and pets; and any traumatic incidents that occurred during childhood (traumatic childhood incidents can come back to haunt an individual with dementia).
2. Adulthood – In this section you would include information on marriages, divorces, children, and any beloved pets. You would also include information on vocational and employment experiences.
3. Hobbies and Interests – Even if your loved one can no longer participate in the activities they loved to do in the past, they may still enjoy talking about them. This information may also give ideas to the activity coordinators on new pastimes for your loved that incorporate their past interests.
4. Emotional Characteristics – Is your loved one an introvert who like some alone time each day to recharge his or her batteries, or is your loved one an extrovert who recharges by being with and talking with others? Does your loved one have a very defined sense of personal space, or does he or she like to touch, to hug, and to be hugged? Is he or she easy-going or does he or she have a short fuse? As you think about the answers to these questions, I think you can see how valuable this information would be to the care facility staff.
5. Immediate Functional History – In this section you would talk about how your loved one functioned right before admission to the care facility. You would also describe any special ways you went about providing care for your loved one. I suggest covering at least the five areas listed below.
a. Eating – What does your loved one like to eat; what doesn’t he or she like to eat? At what times is your loved one used to having meals? Does your loved one have difficulty with swallowing or choking when eating or drinking?
b. Bowel and Bladder – Is your loved continent or incontinent? How frequently does he or she go to the bathroom? How does he or she let you know when they need to go? Is a reminder needed?
c. Ambulation and Transfers – Does you loved one need help getting up and down? Does he or she use a cane or walker? Is there any recent history of falls?
d. Hygiene – Does your loved one prefer a bath or a shower? What is his or her routine for oral care and bathing?
e. Physical Aids – Does your loved one wear glasses or contacts; have a hearing aid, or wear dentures? In a dementia care facility these items are easily lost or misplaced, so you want to be certain the staff knows about any of these aids your loved one uses. It is also good to keep pictures or detailed description of these items in case they are lost or misplaced.
You may think of additional information that would be good for the staff to have about your loved one; feel free to let the staff know about it. As you can see, there is very little that would be considered medical in the above information, but I expect any professional caregiver would welcome this information to help him or her see and relate to your loved one as a person. It will also provide staff people topics for conversation when they are working with your loved one. Always remember that when it comes to your loved one, YOU ARE THE EXPERT, and your information is vital for your loved one to receive the very best care.
Elder Care Coordinator