Case #3 – Louis
Part 1:
Presenting Problem / Background
Louis is a 63-year-old Caucasian male living with HIV who presents with failure to thrive in the community. He has been referred for a home care rehabilitation assessment.
Subjective
Past Medical History
Louis is an unmarried, shy gay man who came out 5 years ago. He was diagnosed with HIV infection approximately 2 years ago. Currently, his viral load is slightly above detectable and he has a CD4 count of 450. Louis is currently considering his HIV specialist’s recommendation to start ART. You are the first healthcare provider to visit him at home. Louis has a history of cardiovascular disease and bipolar affective disorder (BAD).
Social History
Louis lives alone in a one-bedroom apartment in the downtown area. He is a retired classical musician and moved this past year to be closer to his extended family. He was giving private piano lessons to augment his income, until stopping a few months ago due to his deteriorating health.
Louis has not contacted any local resources since his HIV diagnosis and he has very few friends his age. He has no HIV positive peers and therefore he has had no discussion with anyone other than his HIV specialist about the short and long-term implications of his HIV diagnosis.
Louis tells you that he has increasing difficulty getting out to run errands, some of which require taking the bus. He tells you he has a companion, Paul, who is 40 years old, who assists him with grocery shopping and to run a few errands. Upon developing a rapport with Louis, he reports that he had to sell his prized cello in order to pay for Paul’s services. His companion claims to be having financial problems and sends money to support his family abroad. At the present time, Louis states that his finances are not in order and he is concerned as Paul uses his debit card to make grocery purchases.
Objective
During your home visit, you notice that his home is cluttered, disorganized and has not been recently cleaned. During your assessment, you note that Louis has difficulty with ambulation and uses the furniture around his home to provide support for walking.
He has decreased strength of his lower extremities bilaterally (quads = 3/5 and hamstrings = 3/5). His has decreased strength of his upper extremities bilaterally (biceps = 3/5 and triceps = 3/5). He scored 16/30 on the Montreal Cognitive Assessment (MoCA), with main deficit areas being executive/ visuospatial and attention. He has difficulty navigating his utensils while eating lunch.
Based on this assessment you suspect that Louis may have some degree of HIV-Associated Neurocognitive Disorder (HAND), particularly the less severe form known as HIV-Associated Mild Neurocognitive Disorder (HA-MND). You refer to the community OT who undertakes functional neurocognitive testing and assessments of Louis’ function including assessing his physical, sensory and cognitive impairments and abilities. These assessments include both formal tests using pen and paper tasks, and a functional task of preparing a light snack and a drink. The pen and paper assessment indicates areas of impairment and provides a repeatable, scored outcome measure, whilst the functional assessment indicates activity limitations. Together they describe a picture of overall functioning and enable the therapist to extrapolate how performance may be affected across a variety of everyday activities. From the assessment, the OT reports that Louis is grossly oriented, and his stored knowledge (remote recall) is also grossly unimpaired. His ability to attend to most tasks is grossly intact although during the kitchen task he had difficulty attending to more than one task at a time (divided attention). Constructional ability on the formal task and fine motor control on the functional task were both impaired, suggesting that there is an impairment of cognitive-motor function, while he has generally intact verbal fluency. Some impairment to recent recall was noticed on formal testing but was less apparent in the functional task. The most significant impairments, however, are to judgment, planning and organization, which are poor for both the functional and formal assessments. Louis’ ability to self-evaluate his performance is also impaired which affects the level of insight into the difficulties he is having. The functions of judgment, planning, organization, self-evaluation and insight together are called executive function. The OT reports that individuals with impairments in these areas are at increased risk of financial abuse from other people or may manage their own finances poorly, often have poorer health self-management. This is because they often have poor insight into the need for medication or other self-management strategies, and are at risk of self-neglect including not maintaining a hygienic home environment, not monitoring safety and not monitoring sell-by dates of foods.
The OT also completes an assessment of the home environment and finds many trip hazards from cluttered furniture and recommends that these are moved or removed.
Guiding Questions
1. What is HAND? Specifically, what is HIV-Associated Mild Neurocognitive Disorder?
Notes: HIV-Associated Mild Neurocognitive Disorder (HA-MND) is defined as an acquired impairment in at least two domains that produce at least mild interference in day-to-day activities, including self-reported changes in functional ability or observations by individuals who know the person well. HA-MND is considered a concurrent health condition and may be associated with aging and HIV. Individuals with HA-MND often present with features of sub-cortical dementia such as difficulty with cognitive-motor function. Executive function is often also affected whereas language and remote recall are often preserved in early stage disease.
2. What are some of the (a) impairments (b) activity limitations and (c) participation restrictions that Louis is experiencing?
Notes: Consider the physical, cognitive, social, emotional and psychological challenges faced and classify using the ICF Framework.
Some examples include:
- Impairments: decreased strength in upper and lower extremities, impaired high-level cognitive functions (insight, judgment, problem-solving, cognitive flexibility), impaired psychomotor control, impaired divided attention, impaired short-term memory, query loneliness or isolation.
- Activity limitations: decreased mobility indoors and outdoors, decreased balance, decreased ability to carry out ADL, difficulty solving problems and making decisions, decreased ability to carry out IADL such as household chores, grocery shopping, and managing finances.
- Participation restrictions: financial problems, relationship with Paul is potentially problematic – query risk of financial abuse, inability to give piano lessons, query relationship with extended family.
3. What personal and environmental factors might influence Louis’ recovery?
Notes: Personal factors include: aging, his concurrent health condition of BAD (are cognitive issues related to BAD or HIV?). Environmental factors include the level of social support – query companion relationship, extended family, and access to income supports. Also, consider risk of falls due to cluttered environment, risk of infections due to poor hygiene in environment, query other community care supports such as personal care.
4. What additional factors should be considered?
- Nutrition: are there any issues regarding weight loss, nutritional habits or other needs (e.g., food security)? Suggest referral to a dietitian. If appropriate and if necessary, discuss options for community food banks, suppers, food boxes and community cooking programs (which also provide social support).
- Review sleep and stress management. If required, follow up with a pamphlet, discussion or referral for good sleep hygiene.
5. What are some of the short-term and long-term rehabilitation goals for Louis?
Notes: Consider patient values and preferences, and principles of shared decision-making, when discussing and developing goals. Consider patient values and preferences when developing goals with Louis. Use the SMART principle.
Short-term goals:
- To be able to independently prepare a simple snack and hot drink with no significant safety problems within 2 weeks.
- To be able to safely ambulate within his apartment with a cane in 2 weeks.
- To increase strength to upper and lower extremities to 5/5 in 2 weeks.
- To be managing all medication doses using a Dosette Box and alarm system within 2 weeks.
Long-term rehabilitation goals:
- To be able to carry out independent basic ADLs in 6 weeks.
- To be able to ambulate outdoors with a rollator walker in 6 weeks.
- To be able to identify and engage in one enjoyed activity or social activity outside the home in 6 weeks.
- To be able to form a realistic weekly budget with assistance from a social caregiver in 6 weeks.
6. What rehabilitation treatment strategies might be used to address Louis’ impairments, activity limitations and participation restrictions?
Notes: Consider patient values and preferences as well as key medical issues when discussing treatment strategies. Consider using the process of shared decision-making to prioritize treatment choices/strategies, and provide rationale. It is important that the strategies used to address his challenges take into account the ICF. By setting goals that address his impairments, this can lead to improvements in his activity limitations and participation restrictions. Some treatment interventions might include: ambulation training – he might be a candidate for a cane indoors and rollator for longer outdoor distances (to increase his independence to get out to run errands); strengthening exercises, stretching exercises, cognitive training exercises. Referral for personal care services through the community access centre.
Record keeping (e.g., tracking of exercise, medications, and other self-management techniques) may help Louis to maintain his goals. If Louis seems overwhelmed, suggest that he set one goal for the day to provide a purpose for getting up. Additional strategies may include keeping a daily reflection record, especially to identify items for discussion at the next healthcare appointment. Louis should also be encouraged to engage in some type of cognitive activity (e.g., reading, word games, or games on their cell phone).
7. What kind of educational health promotion, prevention, care, treatment and support materials or information might the team provide for Louis?
Notes: Suggest visit to HIV care physician and family doctor to discuss HIV status and potential need to start medications. Consider HIV medication in light of potential HAND as there is increasing evidence to support the benefits of ART in reducing the symptoms of HAND. Provide information on where Louis might be able to access additional community services such as a personal care attendant to assist with ADL and IADL, food banks or community meal programs and CBHO. Louis may also benefit from referral to a peer support program. Examples of peer support content include discussing diagnosis, sharing anxieties, support for exercise and other topics. If referral is to a non-HIV peer support program, the program should be screened for policies around discrimination and there should be a discussion as to whether disclosure of HIV status is needed.
8. What other health or social services might Louis also benefit from having access to? Why?
Notes: Identify other services and providers that might help to address Louis’ impairments, activity limitations and participation restrictions. Consider how you would go about referring to the other service providers and services. Consider the potential barriers that Louis might encounter in attempting to access these services. How might you advocate with Louis to enable him to better access the needed services?
Contact with his psychiatrist, therapist or family doctor to reassess his concurrent BAD diagnosis should be considered as a part of the differential diagnosis. Many of the symptoms Louis is experiencing can also be present in depression and therefore a reassessment gives an opportunity for psychiatric reassessment to monitor the stability of his BAD.
Louis would benefit from ongoing PT, and a referral to OT to specifically to target neurocognitive rehabilitation. He would also greatly benefit from a referral to social work to address the finances and relationship with his companion and perhaps pursue linkage with extended family. The local CBHO can provide information and potentially access to food bank services and additional personal care services if available. He would also benefit from a visit to his HIV physician or family physician to address the deterioration in health and its relation to his HIV and BAD.
9. What issues might Louis need you to help him advocate for?
Notes: Louis may require advocacy to address his relationship with Paul, which appears problematic, especially since there is concern that Louis may be taken advantage of with his deteriorating cognitive status. Louis has had to rely on Paul’s assistance to date, but perhaps with additional health and social services, he will be less dependent.
Louis Part 2
3 weeks later…
Presenting Problem / Background
Louis was receiving weekly PT and OT interventions through a local community organization. He had recently started ART after his recent visit to his HIV specialist physician. He presented to the ER at the local hospital with slurred speech and left-sided weakness. He was diagnosed with a right cerebrovascular accident (CVA) or stroke, and admitted to hospital and referred to rehabilitation. He indicates life is getting worse for him and he needs help to get his life back together again.
Objective
On physical examination, Louis presents alert and awake.
Speech and Swallowing: His speech is slurred. Swallowing assessment indicates he has difficulty swallowing.
Cardiorespiratory: Decreased breath sounds and fine crackles bilaterally in lower lobes.
Strength: Left sided weakness, greater in the leg than arm and leg (quadriceps strength: 2/5 and biceps 3/5). Left truncal weakness resulting in poor postural control.
Mobility: Able to roll to the right and left in bed with minimal assistance.
Lying to sitting requires moderate assist. Requires minimal assist for sitting; 10 minutes sitting tolerance.
Sit to stand requires maximum assist X 1.
Standing tolerance of 10 seconds.
Ambulation: 2 steps with 2 high-wheeled walker and maximal assist X 2.
ADL: Assist of 1 for all self-care (dressing, toileting, bathing).
Cognition: Oriented to person and place but not time.
Louis articulates to you with his slurred speech that he would like to “get better so that he can get back home”.
Guiding Questions
1. What are some of the (a) impairments, (b) activity limitations and (c) participation restrictions that Louis is experiencing?
Notes: Consider the physical, cognitive, social, emotional and psychological challenges faced and classify using the ICF Framework.
Some examples include:
- Impairments: decreased cognition (orientation to time), decreased speech, decreased ability to swallow, decreased strength in left upper and lower extremity, decreased postural control, decreased ventilation to lower lung fields bilaterally. The possibility of HAND is now compounded with potential cognitive impairment from Louis’ stroke.
- Activity limitations: decreased mobility (rolling and transfers and ambulation), decreased ADLs (dressing, toileting, bathing, eating), and decreased sitting and standing tolerance.
- Participation restrictions: query status of financial problems, relationship with his companion Paul is potentially problematic, inability to give piano lessons impacts his ability to generate income and for social interaction, relationship with extended family.
2. What are some of the short-term and long-term rehabilitation goals for Louis?
Notes: Consider patient values and preferences, and principles of shared decision-making, when discussing and developing goals. Consider patient values and preferences when discussing and developing goals. Use the SMART principle.
Short-term goals:
- To increase postural control in sitting by 2 weeks.
- To increase ventilation to lung fields bilaterally in 2 days.
- To increase strength of left upper and lower extremity in 2 weeks.
- To be able to carry out independent bed mobility in 2 weeks.
- To improve transfer ability with lying to sitting with minimal assist, independent sitting X 5 minutes, and sitting to standing with minimal assist, and standing X 5 minutes with minimal assist in 3 weeks.
- To be able to swallow an oral diet safely in 1 week.
- To be able to communicate functionally with alphabet board supplementation in 2 weeks.
- To be oriented X 3 (person; place; time) in 2 weeks.
Long-term rehabilitation goals are goals that might be carried out in rehabilitation hospital.
- To be able to carry out ADLs independently in 6 weeks.
- To be able to ambulate independently with a rollator walker in 6 weeks.
- To be able to swallow a regular diet with thin fluids in 6 weeks.
- To be discharged from rehabilitation to home in 6 weeks.
3. What rehabilitation treatment strategies might be used to address Louis’ impairments, activity limitations and participation restrictions?
Notes: Consider patient values and preferences as well as key medical issues when discussing treatment strategies. Consider using the process of shared decision-making to prioritize treatment choices/strategies, and provide rationale. It is important that the strategies used to address his challenges take into account the ICF. By setting goals that address his impairments, this can lead to improvements in his activity limitations and participation restrictions. Some treatment interventions might include transfer training, postural control exercises, bridging exercises, isometric strength training, functional task practice (ADLs), gait training, speech training, swallowing training, augmentative/alternative communication tools, etc.
4. What other health or social services might Louis also benefit from having access to? Why?
Notes: Identify other services and providers that might help to address Louis’ impairments, activity limitations and participation restrictions. Consider how you would go about referring to the other service providers and services. Consider the potential barriers that Louis might encounter in attempting to access these services. How might you advocate with Louis to enable him to better access the needed services?
- Referrals to PT, OT and SLP. Further cognitive-communication assessment and treatment by SLP may be beneficial for cognitive-communication changes from stroke and HAND.
- Referral to social work to follow up with home situation.
- Depending on Louis’ goals, explore referral to rehabilitation hospital in stroke rehabilitation to return to independent living.
- Follow up with Infectious Disease physician regarding his HIV status and his recent ART regimen.
- Reassess neurocognitive status.
- Referral to a CBHO to assist with social support.
- General healthy living advice offered to stroke survivors: exercise, diet, smoking cessation, etc.
5. What issues might Louis need you to help him advocate for?
Louis may need you to advocate strategies to further explore family relationships and his relationship with his companion Paul. Explore what Louis’ goals are and whether there is potential to have a family meeting with Louis to discuss options for rehabilitation if he is unable to return home directly from acute care.
6. What added complexity does Louis’ concurrent health conditions (stroke, BAD) have as he ages with HIV on his overall health?
Notes:
- There is an increased risk of stroke in advanced HIV, however, the general risk factors for stroke are also important, e.g., age (older), gender (male), smoking status, family history. Louis requires both good standard stroke care as well as ongoing HIV care and will need input from both HIV and stroke services.
- If Louis has issues with medication adherence due to either stroke or HIV related cognitive changes and needs medication for his BAD, then he would be at increased risk of a relapse (mania, depression). There are also associations with stroke and depression and HIV and depression and having a BAD history may increase this risk.
- Equally if Louis’ BAD is well controlled it may not have any interaction with his stroke or HIV diagnosis. Good collaborative care between physical health and mental health services will maximize management of each concurrent health condition.
Medical Management – Infectious Disease Specialist Recommendations
Assessment: Louis is a 63-year-old male living with HIV and is representative of a very high-risk sector of the HIV population (newly infected adults dealing with the effects of aging). His situation is deeply concerning as the tests show he is experiencing both functional and cognitive impairments and is socially at risk of financial or physical abuse, with minimal support to deal with this issue should it occur. Louis has HAND but he also was not on ART initially. If his ART regimen allows drugs to pass through the blood-brain barrier, there is increasing evidence to suggest that his HAND may improve.
Plan:
- Ensure that Louis has a family physician or HIV specialist that he can visit at regular intervals. Discuss with local geriatrics unit/memory clinic whether they would consider seeing him for his cognitive dysfunction despite his young age.
- Initiate work-up to rule out reversible causes of his cognitive decline, should have at minimum: Blood work for electrolytes/extended electrolytes, TSH, B12, folate, syphilis serology and a CT head to rule out hydrocephalus, cerebrovascular disease or space-occupying lesions.
- Perform formal capacity assessment and assist Louis in identifying an appropriate Power of Attorney (POA)/Substitute Decision Maker (SDM) immediately.
- Submit referral to a community access program to assess for whether he would qualify for assistance programs.
- Discuss with Louis the possibility of retirement homes and eventual long-term care, and provide information about local options.