Easing the transition of patients with dementia into an aged care home

The decision to place a patient with dementia into an aged care home is one of the most difficult decisions a caregiver can make and is a life event of enormous significance. Following this decision, there are numerous practicalities for the family to attend to including planning care within the home. Of debate is the continued use of cholinesterase inhibitors in aged care homes for patients with severe disease. Studies have shown up to 47% of patients living in aged care homes had their cholinesterase inhibitors discontinued over a period of 1 year.6

Alzheimer’s disease is characterised by the progressive decline of cognitive function including language, behaviour, emotions, judgement and the ability to do complex tasks.¹ As the disease progresses, so does the level of care required from day services to aged care home placement.² Following the decision to place a patient in an aged care home, there are numerous practicalities for the family to attend to including organising assessment through an Aged Care Assessment Team (ACAT), choosing a facility, the move and planning care within the home.

An ACAT (or ACAS in Victoria) assesses the patient’s eligibility for Australian Government subsidised care in an aged care home (low-level or high level care). The ACAT can provide information to the patient about finding a home which has facilities to care for patients with dementia, how to apply to a home, accepting a place in a home and practicalities regarding moving in. Some aged care homes have additional facilities or specific dementia units for dementia patients which include specially trained staff, clear signage and safe wandering areas for patients. The ACAT will provide names and addresses of suitable homes.³

Anne Deck, Manager of Alzheimer’s Australia Support centre said, “ One of the issues we often come across from family carers who are having to put someone into nursing home is there is a lot of anxiety about how to make the move most comfortable for the person with dementia. What we suggest is that the family and carers come and talk to the facility. This will help the carers and nurses identify things that may potentially be very upsetting for the person with dementia and therefore they can avoid them.”

Research shows that raising the issue with the caregiver early has numerous benefits to ease the transition. It can prolong the time to institutionalisation by instigating home services which meet caregiver current needs or at the very least to allow a timely smoother transition prior to the caregiver’s breaking point.⁴

Professor of Alzheimer’s Disease and Neurodegeneration, Colin Masters from the University of Melbourne’s Pathology department said, “In terms of easing patients into aged care, forward planning is critical. GPs should raise the issue of full time care in a nursing home with carers very early.”

However a different approach should be adopted when discussing the transition with the person with dementia. Ms Deck said, “There is no ideal time to discuss moving into a nursing home with the patient. It depends on each situation and each circumstance and predominantly the person and how receptive they are to the concept.”

Advise the patient’s family to make a list of care needs prior to entering a facility including:³

Physical needs: diet, assistance with any activities of daily living, nursing care (medications, catheters, wounds) and other services such as allied health services.
Emotional, social and spiritual needs: hobbies, community participation, religious provisions, requirements for the carer and family or friends.³

Ms Deck said “When preparing to place a person with dementia into aged care it is helpful if the family puts together a life story of the patient to pass on to the facility so they can know a bit about the person before they go in. The nurses can then use this to make conversation with the patient in order to develop a connection and make the patient feel more comfortable. Also in the process leading up to putting a person into care we suggest that the carers make a list of special things to that person. This could be ornaments, photographs, paintings or anything significant to the person with dementia. These things will help ease the transition and make the patient feel more comfortable in their new home. This should be done before reaching the point of relocation, so the carers feel prepared.”

Continued use of cholinesterase inhibitors needs to be addressed as part of the care plan. Patients with dementia in aged care homes usually have severe disease with difficult behaviour requiring assistance.⁵ This results in increasing costs of care and higher care requirements (one estimate is an extra 229 hours per year spent per dementia patient compared to residents without dementia).⁶Therefore, treatment of these difficult behaviours can reduce health care costs and caregiver time.⁶

Current pharmacologic treatments used for Alzheimer’s disease cholinesterase inhibitors (including donepezil (Aricept), rivastigmine (Exelon), galantamine (Reminyl) and tacrine (Cognex)) which studies have shown beneficial effects on behaviours such as hallucinations, delusions, agitation, anxiety, depressive features and apathy.⁷ Many patients are treated with psychotropic drugs for these symptoms, however, there is a high incidence of side effects and cholinesterase inhibitors are considered a more targeted therapy.⁷

Donepezil may stabilise or slow down progress in mild-to moderate disease but doesn’t prevent deterioration to severe disease.⁸ Treatment is often discontinued when patients reach this stage.⁸ Continuing treatment may delay the need for more extensive supervision and care reducing the burden on aged care home staff and improving patient outcomes.⁶ New evidence is emerging showing that donepezil used in severe patients can slow the rate of cognitive decline, and long-term use of donepezil over 3 years can also slow progress of the disease.^8,9 A 6-month double-blind, parallel-group placebo controlled study has shown that nursing home patients with severe Alzheimer’s disease (MMSE score 1-10) given donezepil had significantly improved severe impairment battery (SIB) scores (5.7 CI 1.5-9.8, p=0.008) and deteriorated less in the Alzheimer’s Disease Cooperative Study Activities of Daily living inventory for severe Alzheimer’s disease (ADCS-ADL-severe) scores (1.7, CI0.2-3.2, p=0.03) than patients given the placebo group.⁸ Further studies show that 3 years of treatment with donepezil can significantly slow the rate of decline as measured by the MMSE (3.8 points change in 3 years) and Alzheimer’s Disease Assessment Scale-cognitive subscale (ADAS-cog) rise of 8.2 points compared with 15.6 points as estimated by the Stern equation.⁹ The latter study supports long-term efficacy and safety of donepezil.⁹ A further study assessing the dosing regimes of the different cholinesterase inhibitors shows that patients prescribed donepezil were more likely to reach an effective dose more rapidly than those treated with rivastigmine or galantamine.6 Administration of donepezil with the NMDA receptor antagonist memantine further slows cognitive and functional deterioration in patients with moderate-severe Alzheimer’s disease.⁸

Studies have shown up to 47% of patients living in aged care homes had their cholinesterase inhibitors discontinued over a period of 1 year.⁶

Professor Masters said “Weighing up the benefits and side effects of cholinesterase inhibitors are a part of normal medical management, whether in aged care homes or not. The criterion for stopping the use of these drugs in patients is an area which is actively under discussion and there are several guidelines which have come out regarding this matter.”

Placement in an aged care home can be associated with a decrease in cognitive function and a more rapid rate of cognitive decline.² As such, it is important to liaise with the family and staff at the aged care home to discuss the continued use of cholinesterase inhibitors and include their use in the patients care plan.

Alzheimer’s Australia provide a number of suggestions for coping with the transition emotionally for both the patient and the caregiver including how to prepare the room, an option of staying with the patient while they settle in, how to part with their patient, activities for the carer to try when visiting and practical ways to continue their caregiving such as helping out at mealtimes, joining in activities and joining a support group.¹⁰

“Usually about a week before the patient is moved into the nursing home the carers will start talking about the change. However talking specifically about moving into aged care will cause a great deal of anxiety in some patients. Sometimes it will have been discussed previously with the patient but they may not remember. Therefore in some cases if you have somebody who is very resistant about going into a nursing home it is better to not mention it at all. This often will bring about guilty feelings for the family carers as they feel they are betraying the person, however any change will cause anxiety for the patient so the carers will need to decide whether discussing the move with the patient is in their best interests” said Ms Deck.

Donepezil may stabilise or slow down progress in mild-to moderate disease but doesn’t prevent deterioration to severe disease.⁸ Treatment is often discontinued when patients reach this stage.⁸ Continuing treatment may delay the need for more extensive supervision and care reducing the burden on aged care home staff and improving patient outcomes.⁶ New evidence is emerging though to challenge this decision by showing that donepezil used in severe patients can slow the rate of cognitive decline, and long-term use of donepezil over 3 years can also slow progress of the disease.^8,9 A 6-month double-blind, parallel-group placebo controlled study has shown that nursing home patients with severe Alzheimer’s disease (MMSE score 1-10) given donezepil had significantly improved severe impairment battery (SIB) scores (5.7 CI 1.5-9.8, p=0.008) and deteriorated less in the Alzheimer’s Disease Cooperative Study Activities of Daily living inventory for severe Alzheimer’s disease (ADCS-ADL-severe) scores (1.7, CI0.2-3.2, p=0.03) than patients given the placebo group.⁸ Further studies show that 3 years of treatment with Donepezil can significantly slow the rate of decline as measured by the MMSE (3.8 points change in 3 years) and Alzheimer’s Disease Assessment Scale-cognitive subscale (ADAS-cog) rise of 8.2 points compared with 15.6 points as estimated by the Stern equation.⁹ The latter study supports long-term efficacy and safety of donepezil.⁹A further study assessing the dosing regimes of the different Cholinesterase inhibitors shows that patients prescribed donepezil were more likely to reach an effective dose more rapidly than those treated with rivastigmine or galantamine.⁶ Administration of donepezil with the NMDA receptor antagonist memantine further slows cognitive and functional deterioration in patients with moderate-severe Alzheimer’s disease.⁸

Studies have shown up to 47% of patients living in aged care homes had their cholinesterase inhibitors discontinued over a period of 1 year.⁶ Furthermore, placement in an aged care home can be associated with a decrease in cognitive function and a more rapid rate of cognitive decline.² As such, it is important to liaise with the family and staff at the aged care home to discuss the continued use of cholinesterase inhibitors and include their use in the patients care plan.

References

Therapeutic Guidelines of Australia. Therapeutic Guidelines: Psychotropic. Melbourne: Therapeutic Guidelines Limited; 2003.
Wilson R, McCann J, Li Y, Aggarwal N, Gilley D, Evans D. Nursing Home Placement, Day Care Use, and Cognitive Decline in Alzheimer’s Disease. The American Journal of Psychiatry. 2007;164(6):910-5.
Australian Government Department of Health and Ageing. Aged Care Australia [online]. 2007 [cited 2008 Dec 7]. Available from: URL: http://www.agedcareaustralia.gov.au/
Buhr G, Kuchibhatla M, Clipp E. Caregivers’ Reasons for Nursing Home Placement: Clues for Improving Discussions with Families Prior to the Transition The Gerontologist. 2006;46(1):52-61.
Grossberg G. Impact of Rivastigmine on Caregiver Burden Associated with Alzheimer’s Disease in Both Informal Care and Nursing Home Settings. Drugs and Ageing. 2008;25(7):573-84.
Dybicz S, Keohane D, Erwin G, McRae T, Shah S. Patterns of Cholinesterase-inhibitor Use in the Nursing Home Setting: A Retrospective Analysis. The American Journal of Geriatric Pharmacotherapy. 2006;4:154-60.
Tariot P, Cummings J, Katz I, Mintzer J, Perdomo C, Schwam E, et al. A Randomized, Double-Blind, Placebo-Controlled Study of the Efficacy and Safety of Donepezil in Patients with Alzheimer’s Disease in the Nursing Home Setting. Journal of the American Geriatrics Society. 2001;49:1590-2599.
Winblad B, Kilander L, Minthon L, Båtsman S, Wetterholm AL, Jansson-Blixt C, et al. Donepezil in patients with severe Alzheimer’s disease: double-blind, parallel-group, placebo-controlled study. Lancet. 2006;367:1057-65.
Wallin Å, Andreasen N, Eriksson S, Båtsman S, Näsmann B, Ekdahl A, et al. Donepezil in Alzheimer’s Disease: What to Expect after 3 Years of Treatment in a Routine Clinical Setting. Dementia and Geriatric Cognitive Disorders. 2007;23:150-60.
Alzheimer’s Australia. Residential Care [online]. 2005 [cited 2008 Dec 7]. Available from: URL: http://www.alzheimers.org.au/content.cfm?topicid=60