Caregiver Stress, Caring &Nursing in Dementias Vikas Dhikav, MBBS (Rohtak), MD (3-years AIIMS) , PhD (Neurology, PGIMER Delhi), Fellowship Clinical Neuropsychopharmacology, Director, Memory Clinic Delhi & Honorary Professor, ISM-IUK, Bishkek, Kyrgyzstan. www.memoryclinicdelhi.com

Introduction Care giving and Nursing are stressful jobs Needs education of Caregivers Medical students Nurses Pharmacists  Palliat Med. 2014 Jun 27.

Introduction Several knowledge deficiencies exist in dementia care, more so in rural areas Dementia (London). 2014 Jun 20.

Background A study was planned to know: Caregiver Perceived Stress using a well validated scale in our patients Its association with severity of dementia Association of Perceived Stress with Activity of Daily Living (ADL) Compare PSS with Controls

Material & Methods Patients attending Memory Clinic Department of Neurology, Dr. Ram Manohar Lohia Hospital, New Delhi Caregivers were Interviewed using Perceived Stress Scale (PSS) Blessed Activity of Daily Living (ADL) score was used Mini Mental State Examination (MMSE) was done for assessing severity of dementias

Demography Patients (n)=31 Controls (n)=30 Males=24 Females=7 (69±11.86) Alzheimer’s disease-AD (n=24)/Mild Cognitive Impairment-MCI (n=7) All MCI cases were males (? Sex Bias) Controls (n)=30 Males=18, Females= 12 Osteoporosis -12 (All Females) Depression (2), Diabetes & Hypertension (6), Psychiatric illness (10)

Results Patients (n)=31 Controls (n)=30 Mean age: 72.35±9.85 Years Perceived Stress Score (PSS)=23.29±7.17 Activity of Daily Living Score=7.97±5.53 Controls (n)=30 Perceived Stress Score (PSS)=7.5±3.12 Mean age (Controls=56±5.53 Years) Activity of Daily Living Score=0.00

Correlation between MMSE & PSS(females)

Correlation between MMSE & PSS(females) R2, (Coefficient of determination)= 0.3204.

Correlation between MMSE & PSS(Both sexes) R2, (Coefficient of determination)= 0.2197.

Correlation between MMSE & Activity of Daily Living Score (ADL) R2, (Coefficient of determination)= 0.5095.

Correlation between Perceived Stress & Activity of Daily Living Correlation Coefficient=0.2437

Perceived Stress of AD/MCI verses Controls (p<0.0001)

Discussion There is significant stress among Indian patients caring for those with dementias and MCI. Results correlate with studies done elsewhere. Neuropsychiatr Dis Treat. 2014 Jul 29;10:1407-13.

Discussion… Caregiver Burden is higher among caregivers of patients with Behavioral & Psychological disturbances compared to those without. Dhikav V, Anand KS. Int Psychogeriatr. 2012 Sep;24(9):1531-2.

Conclusions Caregiver stress is common in AD/MCI. It is higher compared to those with other illness. Caregivers of males experience more stress, compared to women. Higher Perceived Stress is seen in severe cases.

Principles of care giving Encourage patients as much as is possible Try to speak clearly, slowly Never intimidate/argue with patient NEVER EVER use force! Try to give patients, simple alternatives

Stages of dementia Initial stage (Stage-I) Based upon MMSE (between 20-24) Also called mild dementia

Caring for dementia in initial stages Encourage patients to do Activity of Daily Living (ADL) Caregiver plays role of a “guide” and not support Tell patient, where is what: Like where is towel Where are shoes? Just press toothpaste so that patient is able to do brushing If possible, use a chart (Colored) which can guide the patient Cartoons can be useful

Hand wishing & brushing/shaving Show patient how to do hand wash Show patient, how to do brushing

Clothing Put out 2 dresses from shelf Ask patient to choose one of them Try taking dress that is appropriate for season Avoid argument over dressing, as to which one will suit him or something

Toileting Try to mark toilet clearly in house At night, if possible, zero watt illumination can be done around toilet Direct patient to toilet in morning Tell patient about flush

Caring for dementia in moderate stages General principles Avoid complicated things Try to be as simple as possible Don’t think patient can understand all things easily

Caring for dementia in severe stages Patients become dependent in severe stages. Patients may not have orientation of time, place & person.

General principles in severe stages Take care of: Cleanliness Feeding Routine daily activities (e.g. bathing, toileting etc)

What to do? Tell patient what are you going to do Ask patient, are you ready for it? If patient nods, it means, patient is ready for this!

Dos & donts Do’s Give adequate time to patient to accomplice a task Demonstrate if possible Be very polite and smile Say “very good!” if patient has done well.

Don’ts in dementia care Don’t do things in a hurry. Don’t say, “go and have food” “Go and wash your hands” “Go to toilet” Don’t leave patient alone for long Keep a vigil Don’t pass on negative comments NEVER get upset/angry

Medications Take a big box. Separate out medicines for entire week (7 day box). You can write on the box, as to which time of the day, the medicine has to be taken. Keep a watch on number of medicines and one can check compliance by this. Keep medicines at a place that is easily locatable.

Medication schedule Sun Mon Tues Wens Thus Frid Morn Afternoon Evening

Making a call? Many patients, may not be able to make calls. Try and use a ‘big phone set” with “big buttons” Patient may not be able to use mobile. Don’t insist and become frustrated if your patient can not use mobile. Try to teach them some simple ways of using mobile or dial a call so that it is prerecorded.

Handling money Difficult for patient. Train patient/ask them by showing currency notes/coins Patient may be able to identify only few notes. Don’t give too much money to patient.

Money… Do’s Identify patients’ ability to handle money. Keep a vigil on patient spending. Legal consultation may be needed in case the patient has a large sum of money! If patient does well, then don’t forget to “laud” the patient. Keep some money with patient, it helps to retain his self confidence.

Don’ts Don’ts Don’t give different currencies. Hand over pass book. Send patient to a bank. Start being aggressive in case patient commits a mistake.

Moral support… Don’t forget, that patients, “don’t remember” Patients deserve respect And sympathy Try to interview the patient ‘‘alone”

Don’ts in moral support… No criticism Avoid negative comments. “don’t comment only on mistakes” Encourage them to socialize. Encourage them to “get involved” and consider them a part of the “family”

Dealing with restless patient Keep patience. Encourage them. Your support is a MUST. Patients may not be able to control excitement. Seek medical help in this case.

Thank you all -Prof. KS Anand, Dr. RML Hospital -Prof. UC Garga, Dr. RML Hospital -Dr. Sharmila Duraisamy, Dr. RML Hospital -Dr. Harmeet, Dr. RML Hospital -Pinki Mishra, New Delhi -Dr. Hemlata Chauhan, Bhopal -Priya Rana, Delhi University -Prof Yuko Motto, Japan -Prof. Duke La, South Korea -Virender Arya, AITBS Publishers