Tag Archive: family


  1. Stay in touch — show you care. A card, a call or a visit all mean a lot.
  2. Treat the person with respect and dignity. Focus on all that the person with dementia can do.
  3. Do the little things. Drop off dinner or run an errand.
  4. Be specific when offering help. Tackle a task on the family’s to-do list.
  5. Educate yourself about Alzheimer’s. Learn about its effects and how to respond.
  6. Include everyone in activities. Plan a picnic or dinner at your place; include the person with the disease whenever possible.
  7. Be a good listener. Support and accept — try not to judge.
  8. Encourage a healthy lifestyle. Suggest practical tips to exercise and eat right.
  9. Allow the family some personal time. Fill in as a caregiver, when needed.
  10. Keep all family members in mind. From tots to elders, each person reacts uniquely.

family on couch

 

traveling

The summer season is almost upon us, and for many, this is the time of year to let our hair down and take that vacay! For those that are caring for someone with Alzheimer’s disease or a related dementia, however, the challenges associated with traveling can be daunting. Below are some tips and strategies for making your next excursion as stress and worry-free as possible.

Tips for a calm traveling experience:

  • Plan ahead
  • Learn to recognize the warning signs of anxiety and agitation and have a plan to address them. Discuss this plan with the person with dementia.
  • Try not to overload the person with a lot of directions or too much information.

General travel considerations:

  • Environmental changes can trigger wandering or confusion. Enroll in MedicAlert + Alzheimer’s Association Safe Return, a 24-hour nationwide emergency response service for individuals with dementia who wander or have a medical emergency. Call 888.572.8566 or visit alz.org/safety to enroll. Those already enrolled should notify MedicAlert + Safe Return of travel plans.
  • It may be helpful to stick with the familiar. Travel to known destinations that involve as few changes in daily routine as possible.
  • Evaluate options for the best mode of travel. Based on needs, abilities, safety and preferences, decide what would provide the most comfort and the least anxiety.
  • When selecting destinations, consider those that have easy access to emergency health services and pharmacies.
  • Consider the needs and desires of the person with dementia as you plan your trip; elaborate sightseeing trips or complicated tours may cause anxiety and confusion.
  • If you will be staying in a hotel, consider informing the staff ahead of time of your specific needs so they can be prepared to assist you.
  • Have a backup plan in case your trip needs to change unexpectedly.
  • Travel during the time of day that is best for the person. For example, if he or she is more agitated in the late afternoon, try to avoid traveling at this time.

What to keep in mind for visits to family and friends:

Be sure to prepare friends or family members for the visit by explaining dementia and the changes it may have caused. Go over any special needs and explain that the visit could be short or that you may need to change activities on short notice. Some additional considerations:

  • It may be helpful to stay as close to your normal routine as possible. For example, bathing and eating times should be on a similar schedule to that followed at home. Eating in familiar settings, such as at a dining room table, may be less confusing than eating in a crowded restaurant.
  • Be realistic about abilities and limitations. Allow for extra time when scheduling activities.

Suggestions for air travel:

Moving through an airport requires focus and attention, as the level of activity can be distracting, overwhelming and difficult to understand. Please consider the following when traveling by air:

  • Avoid scheduling flights that require tight connections.
  • Even if walking is not difficult, consider requesting a wheelchair so that an airport employee is assigned to help you get from place to place. Most airlines ask for at least 48 hours of notice.
  • Contact the Transportation Security Administration (TSA) at least 72 hours prior to travel for information about what to expect during the security screening. While at the airport, remind the person what he or she can expect and inform the TSA agent at the security checkpoint that the person has dementia.
  • Do not hesitate to ask for assistance from airport employees and in-flight crew members.
  • If the person needs help using the restroom, look for companion care bathrooms so you can more easily assist.
  • Stay with the person at all times.

 

When one person receives a diagnosis of Alzheimer’s disease (AD) or a related dementia, the news reverberates throughout the entire family. All family members are affected in its wake, and each person will process the news differently. Children and teens, for instance, might experience acute grief and emotional losses that are different than an adult’s experience. Furthermore, it is estimated that as many as 250,000 children aged 8 to 18 are family caregivers for those with AD in the US (Rosenthal & Greer, 2011) . With millions of families being affected by the disease — and so many children on the front line of caregiving — it is crucial that we understand and overcome the unique challenges faced by this young group.

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Keep Open Lines of Communication

Although children/teens may not be privy to everything that is happening in the household, that doesn’t mean they are spared any stress or anxiety. The young person might be aware of the tense atmosphere in the family, but not understand why. This could cause them to blame themselves, feel guilty, or retreat from family involvement. Therefore, it could be more damaging to ‘sweep the issue under the rug’ rather than to address it head-on. Even if the truth is unpleasant, it is better to be open and honest about changes as they occur.

When a family member is diagnosed, it could be helpful to schedule a family meeting or one-on-one conversation with the youngsters. This will help to facilitate on-going discussion about the disease, and it will allow family members to freely surface concerns or questions.

Answer Questions Honestly

Respond simply to questions in an age-appropriate, honest way. Children are astute observers and are often aware if someone is being inauthentic. Remember to address and validate the young person’s emotions. Listen attentively to the child/adolescent and offer reassurance.

Teach Your Child about the Disease

Education about the disease can often aid in dispelling fears and anxiety. Use concrete examples or even humor to help educate your child or adolescent. For example, you could say ‘Even if Grandpa sometimes forgets your name, he really enjoys spending time with you’ or ‘If grandma says something mean or upsetting, remember is the Alzheimer’s disease making her act this way”. Picture books have also been shown to be effective in teaching children about dementia and older adults (Holland, 2005). Encourage your child to ask questions. Be patient and use words that are easy to understand. Reassure your child that just because a person in the family has Alzheimer’s, it does not necessarily mean that he or she or other family members will get the disease too.

Create Opportunities for your Child to Express Feelings

Agitation, withdrawal, poor performance at school, lost of interest in activities, etc. are all possible indications that the young person is suffering emotionally. It is important to create an environment that is conducive to open expression of feelings. Teens may need some additional prodding in order to open up. Younger individuals may express themselves better through painting, poetry, or a journal.

Encourage your Child/Teen to get Involved in Caregiving

Allowing the young person to be involved in caregiving, can help him/her to feel included and in control of the situation. Teach your child about appropriate communication techniques, such as speaking slowly and using body language. Below are some ideas on activities children can share with a person with dementia:

  1. Bake cookies
  2. Take a walk around the neighborhood
  3. Put a puzzle together
  4. Weed a garden or plant flowers
  5. Color or draw picturesbcp036-05
  6. Make a scrapbook of family photographs
  7. Read a favorite book or story
  8. Eat a picnic lunch outside
  9. Watch your favorite TV show together
  10. Listen to or sing old songs

However, be careful to not overwhelm the teen/child with responsibility, and he/she should probably not be left alone with the person with dementia. Acknowledge and appreciate the young person’s efforts in caregiving.

Early-onset Alzheimer’s disease (EOAD)

Early-onset Alzheimer’s disease affects individuals in their 50’s, 40’s or even younger. When someone is diagnosed with EOAD, their children may still be school age and living at home. In these cases, the children in affected families often take on more caregiving responsibilities and experience greater emotional upheaval, as their parent loses mental faculties during critical developmental periods. It is important to exhibit even greater patience and understanding with these unique cases.

References

http://www.afateens.org/

http://www.alz.org/living_with_alzheimers_just_for_kids_and_teens.asp

Holland, M. (2005). Using picture books to help children cope with a family member’s alzheimer’s disease. YC Young Children, 60(3), 105-109. Retrieved from http://search.proquest.com/docview/197697278?accountid=27927

Rosenthal Gelman, C., & Greer, C. (2011). Young children in early-onset alzheimer’s disease families: research gaps and emerging service needs. American Journal Of Alzheimer’s Disease & Other Dementias26(1), 29-35. doi:10.1177/1533317510391241

Alzheimer’s is a highly individualized disease and symptoms may vary widely from person to person. Every human being is unique, and we respond to challenges and disease uniquely. Similarly, caregivers and family members of those with dementia represent distinctive family systems and dynamics. The roles we encompass as family members may change with the progression of the disease, particularly as the person requires more care and he/she loses decision-making powers. It is not uncommon for family tensions to grow and conflict may ensue. Moreover, families that were dysfunctional before the onset of the disease, may have an increased level of difficulty in overcoming obstacles and various changes (Podgorski & King, 2009). However, greater family harmony and cohesion has been associated with reduced caregiver burden and reduced levels of behavioral issues and agitation in the care recipient. Understanding the impact of dementia on the entire family unit is of critical importance, if we hope to combat these adverse effects and maintain family solidarity and synchrony.

family conflict

Accept and Ask for Help

Although it can be challenging, if the primary caregiver is receptive to asking for and accepting offers of help, their burden and stress levels may be lessened and greater family harmony may result.  Being specific in asking for help and delegating tasks that match the helper’s strengths are two method of facilitating this process. Click here for a sample check list that caregivers or caregiver-helpers may wish to use.

Ability to be Flexible

Families that are successful in caregiving often possess a greater willingness to adapt to change and be flexible. If the family is too rigid, they may be unable to make changes and everyone potentially suffers. Family members may maintain outdated roles which are no longer beneficial to the group. For instance, a parent that will not accept help from her adult daughter because she believes it is not the daughter’s responsibility, hinders an opportunity to bring needed help into the home. Taking on additional responsibilities and new roles are a difficult transition to undergo, but having clear communication and support within the family unit may help to make the transition less stressful.

Old Family Dynamics Die Hard

Issues related to divorce, family secrets, financial disputes, etc., could be resurfaced as the family convenes over the person’s diagnosis. Families that exhibit dysfunctional patterns of relating to one another before the onset of the dementia, typically continue these patterns throughout the journey with the disease. However, families with higher levels of cohesion, lower levels of family conflict, and clear communication channels, often fare better under the stresses of caregiving.

Although dysfunctional family patterns may be difficult to change, coming together regarding a family member’s dementia may be an opportunity to reconnect and rebuild fragmented relationships within the family. In certain cases, it may be helpful to seek the advice of a professional, such as a family therapist, to help facilitate this change.

References

Mitrani, V. B., Feaster, D. J., & McCabe, B. E. (2005). Adapting the Structural Family Systems Rating to Assess the Patterns of Interaction in Families of Dementia Caregivers. Gerontologist45(4), 445-455.

Peisah, C. (2006). Family conflict in dementia: prodigal sons and black sheep. International Journal Of Geriatric Psychiatry21(5), 485-492.

Podgorski, C., & King, D. (2009).Losing function, staying connected: family dynamics in provision of care for people with dementia. Generations33(1), 24-29.

Sherman, C. W., & Bauer, J. W. (2008). Financial conflicts facing late-life remarried alzheimer’s disease caregivers*. Family Relations, 57(4), 492-503. Retrieved from http://search.proquest.com/docview/213938206?accountid=27927

Tremont, G., Jennifer, D. D., & Bishop, D. S. (2006). Unique contribution of family functioning in caregivers of patients with mild to moderate dementia. Dementia and Geriatric Cognitive Disorders, 21(3), 170-4. Retrieved from http://search.proquest.com/docview/232494894?accountid=27927

Vernooij-Dassen, M., Joling, K., van Hout, H., & Mittelman, M. S. (2010). The process of family-centered counseling for caregivers of persons with dementia: Barriers, facilitators and benefits. International Psychogeriatrics, 22(5), 769-77. doi:http://dx.doi.org/10.1017/S1041610210000050