Supporting a Couple When One Has Dementia

The diagnosis of dementia is often devastating for the family who is left helpless to the cognitive changes dramatically affecting functioning of their loved one. The behavioral and personality changes that often ensue can be life-changing for the patient and the spouse. The dynamics of the relationship can undergo dramatic cognitive, physical and emotional changes precipitating a spectrum of emotions ranging from anger to frustration to overwhelming sadness. In addition, the physical toll on the caregiving spouse puts him or her at higher risk for physical and emotional strain.

This teaching strategy focuses on supporting the spouse when a diagnosis of dementia changes the relationship. It looks not only at the emotional and educational support needed for the best possible outcomes, but also at the economic challenges of managing the needs of a patient with dementia.

Supporting a Couple When One Has Dementia

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Learning Objectives

Students will: 

  • Develop a plan of care for the spouse of a patient diagnosed with dementia
  • Assess the support resources appropriate for the care-giving spouse
  • Identify the emotional struggles related to changes in the relationship when a spouse is diagnosed with dementia
  • Correlate functionality with level of care needs in a patient with dementia
  • Assess the financial requirements to meet the level of care needs in a patient with dementia

Learner Pre-Work

Read the articles on the AARP resource page 

 

These webpages will provide the student with information to discuss the situation of John and Anna Philips below.

Suggested Learning Activities

The case study focuses on the caregiver of a spouse diagnosed with dementia. Since dementia is a neurocognitive degenerative disease, the caregiver is frequently faced with the spouse’s continuously evolving changes. Issues around accepting help and appropriate care environments are common. This teaching strategy helps the student to understand these issues, and to identify resources that can help with the process. In addition there is a practical element to the activities of this teaching strategy as the student looks at the cost analysis of the care required based on function and needs. It enhances the students’ human flourishing and spirit of inquiry.

Case Study: John and Anna Phillips 

Hello my name is John Phillips. Actually Dr. John Phillips, but I haven’t really gone by that in quite some time. I was a surgeon for almost fifty years; general surgeon. They didn’t have all of those specialties like they do now. I really loved my work and I was quite good at it. I really miss it, but I guess I have my hands full taking care of my wife Anna. We have been married for sixty-two years. Yup- 62 out of my 87 years I have been married to the same woman. We met when I was a surgical resident and she was the prettiest nurse on the floor. Yes it has been a good 62 years with my Anna. She really took care of things; took care of me. She was a great organizer; always knew the birthdays and anniversary dates. Not so much anymore though. She started having memory problems a few years ago. At first I was the only one that noticed. Now it is getting worse. Sometimes I have to remind her to change her clothes and she hollers at me when I correct her when she is confused. I worry about what the future brings. We moved to this continuing care retirement community and gave up our big home. We live in the independent living section, but I wonder how long I am going to be able to manage Anna at home. She says no when I ask her if we can hire somebody to come in a few hours a day. I had to admit it sometimes I am embarrassed by what she says and does. I know it is terrible to say that but she just isn’t the same Anna 
anymore.

Materials

1. After reading the articles In Sickness and in Health (Sometimes) Anguish and Caregiver Burnout: Steps for Coping with Stress consider the following:

  • What concerns do you have for John as Anna’s dementia progresses?
  • What resources would you suggest that might be helpful to John and Anna?
  • How would you collaborate and support John to get Anna help when she says no?
  • What do you think John is experiencing?
  • What challenges do you surmise John will face as Anna’s dementia progresses?

 

2. Using ideas suggested on the AARP resource page: When Loved Ones with Dementia Feel Ashamed and Cover Up Mistakes, consider the following: 

  • How would you advise John to manage Anna’s agitated behaviors?
  • What caregiver support groups might be helpful to John as he copes with Anna’s dementia?
  • How can you help John and Anna maintain their dignity as the dementia progresses?

 

3. Review the Try This:® Series dementia webpage. Consider the functional cognitive, physical and behavioral changes that accompany a diagnosis of dementia. Connect these changes with what type of care an individual may need. For example does the caregiver need some respite and does having a home health aide a few hours a day satisfy this need, or does the patient need 24-hour skilled care?

  • How would you begin to assess the functional abilities of a patient? (review the Fulmer SPICES assessment or the Mini Cog™ from the suggested reading section)
  • What tools might be helpful as you conduct this assessment?
  • How are risks and benefits discussed in terms of safety and the appropriate care environment?
  • How is the caregiver’s needs considered when decisions about care are being made about their spouse?
  • What kind of financial assistance is available for care?

 

4. Use the AARP Long Term Care Calculator: Estimate the cost of staying in the various levels of care by state. Compare and contrast costs of assisted living, in home help and long term care in your area.

  • How would you help to guide a family as they look at the options of varying levels of care?
  • What resources would you recommend to a family as they make decisions about transitioning to a different level of care?
  • How do you think varying levels of care are financed in your particular state?

Suggested Reading

Silva, M. C. (2014). Caring for dad at 100: Challenges and coping strategies. Journal of Psychosocial Nursing & Mental Health Services, 52(1), 17-20. doi:10.3928/02793695-20131126-05 

Sorrell, J. M. (2014). Moving beyond caregiver burden: Identifying helpful interventions for family caregivers. Journal of Psychosocial Nursing & Mental Health Services52(3), 15-18. doi:10.3928/02793695-20140128-05

Author Information

Laureen Tavolaro-Ryley, MSN, RN
Community College of Philadelphia
Philadelphia, PA