Sundowners after a visit to the hospital

Several family members have commented here about loved ones who began showing signs of Sundowners when hospitalized, or a loved one who had dementia and perhaps some Sundowning symptoms, which worsened significantly while in the hospital.  Unfortunately, older adults in general often suffer negative effects when hospitalized.  Numerous medical studies have documented the levels of functional decline in older adults (significant as early as day 2 of being in the hospital) due to limited mobility, medication side effects, infections and more.  However, the cognitive and behavioral impacts are less often emphasized.

What are some of the factors that cause an elder with Alzheimer’s or other form of dementia to worsen in the hospital?

  • Unfamiliar environment, change of routine, unfamiliar people, noises, etc.
  • Medication side effects (as we age, it becomes harder to metabolize medication so the impacts are greater and some medications are very detrimental to people with dementia especially–unfortunately, sometimes the very “anti-psychotic” medications that are given when behavior problems arise)
  • Effects of surgeries and procedures, pain and the body’s efforts to heal
  • Infections (as patient advocates, we often ask the doctor to order a urinalyses when behavior changes rapidly, as this often indicates an underlying infection, commonly a Urinary Tract Infection)

Hospital delirium is one of the most common hospital complications for elders (read more in this New York Times article on Hospital Delirium), even in those without cognitive problems present beforehand.  Now, imagine  how this problem is magnified for someone who was already diagnosed with Alzheimer’s disease or suffering cognitive issues.

What can you do as your loved one’s advocate?

  • Advanced Care Planning is one of the most important ways you can help your loved one.  Work together with your loved one’s medical professionals on how different concerns can be addressed and when hospitalization makes sense or can be avoided.  For example, is there a way to treat an issue as an outpatient?  Why is a surgery being recommended and what are expected outcomes?  When a loved one lives in a care facility, especially, it can be challenging to convince them not to send your loved one to the hospital for things that can often be managed without a call to 911.
  • Do things to help ensure you are notified if your loved one goes to the hospital (if he or she lives with you this may not be a problem, but can be especially problematic if you live at a distance).  Make sure he or she has a “File (or Vial) of Life” indicating your contact information and that you are listed as an emergency contact to all relevant parties.  It will make a significant difference if you can get to the hospital quickly, or communicate with someone there so they understand your loved one’s situation.
  • When a loved one is hospitalized, provide round the clock care.  Can family members rotate shifts to be there all the time?  This can be quite challenging, so you might also consider hired “sitters” or home health aide/certified nursing assistants to assist with some shifts.  Make sure they have experience and training in dementia care.
  • Ensure the hospital is using geriatric safety precautions in the way they handle your loved one’s care.
  • Ask questions and advocate, advocate, and advocate some more.  Understand what tests are being done, procedures being recommended, medications being changed and the expected outcomes and timeline.  If you cannot be present, consider bringing in a geriatric care manager to be the local advocate.  Even if you are present, having a professional patient advocate like a geriatric care manager to consult with may be helpful and many can be brought in for crisis management or one-time services to fit your needs and budget.

I will be posting more advice on this topic, as well as issues like discharge planning and Sundowners Caregiver tips.  Please share your story and hints about hospitalization and how it affected your loved one or what you found helped!

You may also find these books helpful: Recommended Reading for Alzheimer’s and Dementia and this article that includes tips as well as a downloadable preparation/packing list Senior Care Advice: Managing a Hospitalization.

Coping with Sundowners and End of Life Counseling

Hospice and end of life counseling are two realities of Sundowners Syndrome  that many of us do not want to face. The symptoms of Sundowners and the treatment options are difficult enough to cope with. Helping a loved one cope and live with Sundowners Syndrome requires structure and a lot of patience. So, what do you do when end of life counseling changes are introduced? Here are a few ways to cope with end of life counseling and a loved one living with Sundowners.

Be Their Voice

One of the largest benefits to your loved one is to be their voice when they cannot. End of life counseling is often handled between a care counselor and the patient. In cases where Sundowners Syndrome is concerned, this same connection may not be available. Your loved one may not understand what is happening and the change the counseling discusses can be too much for them to handle. This is where you need to step in, discuss the situation with the counselor and help the counselor conduct their job while helping your loved one with the choices they may be faced with. Make sure that choices fit with the ideas, morals and ethics your loved one lived by.

Comfort not Extension

The hard truth is that extending a life may not be an option. If that is the case then focus on the comfort level of your loved one. Try to discuss this with the counselor and have them get on the same page as you. Let them understand that you have faced the situation and the comfort of your loved on, emotionally and physically, is the top priority.

It is not Necessary

The biggest misconception for loved ones is that end of life counseling is a must have. End of life counseling is not necessary. If you feel that the idea of end of life counseling is too much for your loved one living with Sundowners to handle then do not feel you have to put them through it. The truth is that you can handle the end of life choices. The idea of end of life counseling is to offer assistance but if it will only upset your loved one then do not feel obligated to have it.

Be Open to Suggestions

When you are a loved one of someone living with Sundowners, you may find yourself living in a pattern. You handle things a certain way. You may have opted for home health, which causes a whole set of senior living changes. You do what works for yourself and for your loved one. You may also find yourself making choices that “keep the peace.” If you do decide to try end of life counseling, be open to suggestions that are offered by the counselor. Be open to different changes they suggest or ways they suggest to discuss end of life issues with your loved one. If it still is not working for you or if it is making your loved ones comfort level drop then by all means discontinue the sessions. It is always your choice.

Living with Mom Sundowning

My mom is 91 and lives with me for the past 12 years. She was always full of life and mentally sharp as a tack. She has suffered from chronic utis over the last few years which caused a lot of confusion so I attributed her mental changes on those but I have seen a regular decline in her attitude and now have come to realize this is not clearing up so I guess I am the one living in denial.

For the last 6 months all she wants to do is sit in her chair not talking, staring off in to space has no motivation or ambition to do anything. I have tried to get her interested in painting, coloring, reading or just talking to me. I have decided to get her enrolled into a adult day center thinking she might talk to someone other than me and maybe get in to some of the activities to keep her mind occupied. I hope some of this helps. I promised her I would not put her in a nursinghome many years ago as long as I could take care of her home here. It is getting more difficult each day. If anyone has any advice or ideas I would appreciate it.

Respite Care – Caregivers taking care of themselves

The term used for caregiver rest, or a short break for relief, is respite care. Respite could be a short period every day where you get out to a favorite activity, to do errands or simply relax.  Or, it could be a week more break while you go on vacation or attend a family event.  It could even be having someone to help you during the most challenging hours of care, to support each other and more easily handle your loved one’s needs (and restlessness, agitation, redirection, responding to fears/concerns).

What are potential sources of Respite Care?

  • Family, friends, church and other social groups are often the first line of defense.  Can your sister come to stay with Mom while you go away?  Can friends help you run errands or sit with your loved one while you have an appointment?
  • Hired home caregivers (home health agencies for example) can come in for short-term assistance or on a regular basis.
  • Assisted care facilitiess often offer respite care, in which a person can be temporarily admitted.  Some also offer day programs, where a person can attend without residing there.
  • Adult day programs often offer different hours of attendance, so for example, your loved one could attend in the afternoons or mornings while you attend to other activities.
  • For respite care costs (i.e. all the other options here besides the first), contact your local Area Agency on Aging or Alzheimer’s Association about financial assistance.  There is some limited funding for short-term caregiver respite for which you might qualify.  Read more about Respite Senior Care Costs for various options.

The biggest question or concern for a Sundowners caregiver is “How will my loved one react?” or “How can someone else handle the situation?” when you know your loved one requires special care and attention.  This is a very valid concern.  Transitions and changes are difficult for any person with dementia and especially concerning when your loved one sundowns.  It is important to evaluate which options will provide the least disruption and be best for your loved one.  Equally important will be preparing “substitute” caregivers to be better enabled to handle the situation.

Here are a couple tips:

  • Evaluate what setting/option might work best for your loved one.  A familiar family member or friend in the normal setting may be least disrupting.  However, it can quickly fall apart if that person is not used to the situation or trained in working with someone with Sundowners.  Maybe respite care during the hours when your loved one is most calm (i.e. adult day care or hired caregiver in the morning) would provide you a break, while allowing you to be there when you feel you can best handle the more challenging times.
  • Ensure any providers you are considering (home health agency, assisted living) have extensive experience working with individuals with dementia and have knowledge of Sundowners Syndrome.  Ask them how they would deal with your loved one’s behaviors and what type of training and experience their caregivers have in this area.
  • Provide “substitute caregivers” with background information and tips that will help them in caring.  For example, what tends to bother your loved one, what is the normal routine, what helps to calm him/her down or provides reassurance or distraction?  What are some topics of conversation or activities that he/she enjoys?  Paint a picture of a typical day as well as some of the more sporadic behaviors or occasional issues that arise.  You can get more tips for Alzheimer’s caregivers preparing for alternate care options and a Checklist of Items to Consider to Better Prepare Substitute Caregivers.

Have you had an experience with respite care?  Successful or otherwise?

What is your biggest concern about respite care for your loved one with Sundowners?

Transition Planning for Elders

My recent post about the Negative Effects of Hospitalization explained some of the challenges for elders in general who are hospitalized, as well as how hospitalization can impact cognitive functioning and exacerbate Sundowning.

What if your loved one is currently in the hospital?  Where do you go from here?  How can you minimize the risks of transitions (from home to the hospital, returning home afterwards, or going to rehabilitation or a care facility)?

Transitions bring the potential for problems, because of potential inconsistency in care, miscommunication, and changes.  Patients with Sundowners need special care and attention during transitions to new environments.

  • Ensure an advocate is closely involved during all transition times.  Can a family member be present?  Should you consider a professional advocate/geriatric care manager to assist?  The advocate’s primary role is communication–providing good information so the medical providers can do the best job/have an understanding of the patient and ask vital questions.
  • Plan early to avoid surprises and feeling rushed.  Patients leave the hospital sicker than ever before.  As soon as your loved one is hospitalized, begin the dialogue about expected outcomes and what will happen next.
  • Make sure all parties have a thorough, realistic picture of your loved one’s situation and needs.  When your loved one goes to the hospital, inform staff of behavior challenges and concerns.  When you are planning for discharge, explain what resources the patient does or does not have and where you will need help for safety.  If your loved one is going to a care facility, inform staff of his/her needs and ask them to explain how their staff will provide the necessary care and precautions.
  • Keep good records and use a checklist to help manage the transition process.  You may want to read this article on care management checklists, where you can get a copy of a free discharge planning checklist.

It is best to minimize change for a person with Alzheimer’s or other forms of dementia, but that is not always possible.  You can, however, take steps to make transitions more smooth and ask those involved in your loved one’s care to partner with you in doing so.

Do you have a story to share about what happened during a transition for your loved one?  A tip you can offer to others? We welcome comments!