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Dementia Care: The Three Tier Prosthetic Environment
To recap from last week’s blog and to summarise thoughts expressed over the last three environment specific blogs: If each area of the care environment is designed to compensate for the degree of strengths and abilities of its residents, allowing a smooth transition to the next, more care- dependent zone with the onset of increasing need, the design achieves the otherwise impossible task of allowing the person to remain at the care site and experience the same care staff and surroundings. They receive environmental compensation not from moving accommodation but from the accommodation itself changing and modifying within the same but progressively more adaptive prosthetic environment.
Promote strengths, compensate for losses
The first area of the building (or the first lounge or wing) will have design features that compensate for the basic generally acknowledged difficulties of ageing such as the provision of level walking surfaces (cardiac and respiratory), assistive door handles (arthritis and weakness), highly contrasting gross features (failing and non-discerning sight diminishment) and call assistance technology, as well as having specific design innovations that will compensate for the losses in dementia illustrated within the first level of the stage theory model of the Alzheimers association which is presented at the close of this blog.
One of the ways of applying individualised care in a care setting is that of care streaming (Stokes, 2000). Care streaming in its original concept was about changing the face of dementia care away from the ‘one building, all served’ philosophy in which people were indiscriminately warehoused, regardless of their abilities, on the probable diagnosis of dementia and with the failure to understand dementia has many different diseases within its syndrome and that these differing dementia’s can affect people in many different ways and cause many, varied symptoms which again differ between diagnosis and individual to individual.
Care streaming as I interpret and use it is about individual accommodation for at least three broad levels of dementia care:
- A social model of residential/nursing care for those people with degrees of dependency requiring supports beyond domiciliary care and general care needs.
- Challenging behaviour units for those people whose symptoms are disruptive or harmful to self or others and/or manifest coexisting psychiatric disturbance.
- Hospice type units for those people in the final stages of gross dependency who are compromised not only by dementia, but also by physical infirmity and frailty. (Smith, PTM, Care First, 1997)
Although the physical reality of care steaming has yet to be realised over any large organisation, a number of specialised care homes where the author was the registered home manager adopted the concept and a number of groups subsequently managed have to one degree or another adopted these principles which the blogger terms ‘the adaptive response model’. In single, stand alone care homes the environments were adapted into three zones, roughly based on the above.
Each person was assessed as to their level of ability and then provided with the special adaptations of their living unit.
Each zone was physically assessed as to be meeting the needs of each of its residents while producing positive stress and limiting the negative, for simplicity we can call these group A, B and C the environments were as follows;
- Group A’s environment should be entertaining, provide some physical challenges and be constantly a source of mild stimulation.
- Group B should have a protected and safe environment with small areas for individual or small social groups. There should be mild stimulation that can be stopped when overload occurs. Pathways should be clear and lighting should be enough to reduce shadows but not enough to provide glare.
- Group C should have a serene and quiet environment where stimulation is minimal and one- on- one interventions are lengthy and comforting.
Interaction between residents within each zone should be facilitated constantly and the good use of the environment will encourage this without unnatural pressures.
Space and stress
Negative and threatening environments can acutely affect an individual. The equations as far as stress production are:
Too much space = negative feelings of fear, abandonment and isolation Too little space = fear, aggression and suspicion.
Personal space has been calculated at the following values for healthy individuals.
- Intimate (0–18 inches) is reserved for full- contact relationships, such as those involving comforting or lovemaking or occasionally for relationships governed by rules or for heated argument.
- Personal (18 inches – 4 feet) is for friends involved in conversation, where touching may occur.
- Social (4–12 feet) is for business interactions, formal and informal and more formal social interactions, where people are not acquainted and not especially friendly.
- Public (12–25+ feet) would be used for very formal interactions, e.g. between speakers and audiences, or defensively where interaction is not desired. (Hall, 1966)
From the above, any interactions closer than 18 inches (45 cm) can be assessed as potentially stressful and with a potential for a frightened or hostile reaction.
While personal space is one factor in stress producing reactions the forming of territorial barriers causes quite another problem. As we have already introduced in previous blogs during stress reactions (and especially when coupled with confusion and negative self- image) dependency on routine and structure becomes a major factor of survival and the perseverance of well-being.
The recognition by care teams of primary, secondary and public territory will prevent unnecessary confrontations and further heightening of stress. Rooms, chairs and personal space (which can become extended when confused or feeling threatened) are considered primary territory and an invasion of this area can be seen as a direct confrontation and can heighten aggression or reduce feelings of worth and power if no reaction is possible.
Delicate and thoughtful handling of personal space and primary territory must be a major priority in dementia care
The second and third area accommodations B, and C will have many of the first area features but will gradually introduce more staff - assisted features and gradually reduce environmental pressures.
In the case of level three accommodations, the unit should have larger bedrooms featuring automated beds and monitors while self- access kitchens, a feature of the first two areas, will be removed.
Also at level three accommodation bedrooms will feature overhead hoist tracks and all areas will allow wheelchair access. Bathrooms will be larger and feature hoists as standard (Coons, 1996). There will be a heavy reliance on natural sunlight throughout all areas and staff facilities will be separate from the living areas of the residents, thus accommodating the proviso that staff need as much consideration as those in their care (DSDC, 2008).
There are a number of reasons for creating adaptive care streamed stage theory living plans, not least the idea that adaptive and prosthetic environments support the contentions of the requirement to maintain dignity, identity and personhood. Further because insight is maintained long into the dementia process (Jones & Miesen, 1993) and to house people together, with deeply contrasting cognitive abilities, simply because they have an arbitrary diagnosis of dementia, is in the view of the author fundamentally and ethically wrong.
Persons who retain insight in the early and middle stages of their illness will have demonstrated to them, on a daily basis, just by observing their residential compatriots, just exactly what their future holds!
The design remit for the adapted buildings outlined in this series of blogs has made a specific claim that the design should accommodate three levels of group function. Although it is not the reality that dementia pathology fits neatly into any stage theory, nevertheless, the use of models of distinct stages of function does help to allocate care, design and funding to like client groups (Stokes, 2000).
The type of disabilities faced in living area one, where technological compensation may be helpful, will be:
- Impairment to memory capabilities, particularly in working or short-term memory.
- Impaired learning: the inability to lay down new environmental maps (the process where we internally digest and store landmarks and the like from the existing environment for repeating journeys, such as finding our way around new towns, streets and buildings).
- Impaired levels of reasoning: these may lead to increased frustration and feelings of worthlessness or self- doubt (Parkin, 1999).
- A decreased ability to deal with stress from both daily living and the environment due to the above factors and an increasing tendency to rely upon information from the senses (Ballard et al, 2001).
In living area two there would be more likelihood of the development of compensatory type behaviours and for the need to adopt behaviours that challenge to compensate or display unmet needs.
- The environment would need to be less stimulating than in area one but this must never be allowed to remove stress to the point where lack of stimulation becomes problematic.
- More prosthetics would be required in this area as senses would be more affected by the disease progression and picking up clues from the environment of what is expected must be enhanced and exaggerated.
Area three should take on the feature of sanctuaries or hospices with colours, music, lighting, odours and so on which are used to calm and soothe.
A basic (and purely theoretical) three stage model
The Alzheimer’s Association has suggested a three- stage model of need, that may prove to be helpful in designing for heterogeneous groups within the overall intended home model (McKhann et al, 1984) and that helps us with our use of care streaming.
The adaptive design elements of the care home can be much more fully provided if at each stage the intended living area expressly reflects the major needs of each prospective tenant.
Although the stage theory proposed by the Alzheimer’s Association is somewhat crude, the distinctions it draws between the varying abilities of the person at each stage of their illness, indicates the need for design elements that would dramatically differentiate between those required by a person after four years of illness and those required after a further 12 years of disease progression and would follow closely the guide for areas provided above.
First stage: two to four years leading up to and including diagnosis
- Recent memory loss begins to affect performance
- What was the person just asked to do?
- Confusion about places – gets lost in new and sometimes in familiar places
- Loses spontaneity, the spark and zest for life
- Loses initiative – can’t start anything
- Mood/personality changes and person becomes anxious about symptoms, avoids people
- Poor judgements – makes bad or poorly informed decisions
- Takes longer with routine chores of daily living
- Trouble handling money and paying bills.
Second stage: two to 10 years after diagnosis (longest stage)
- Increasing memory loss and confusion with a much shorter attention span
- Problems recognising close friends and family members
- Repetitive statements and movements
- Restless, especially in afternoon and at night
- Occasional muscle twitches or jerking
- Perceptual- motor problems
- Difficulty organising thought, thinking logically
- Can’t find right words – makes up stories to fill in blanks
- Problems with reading, writing and numbers
- May become suspicious, irritable, fidgety, teary, or playful
- Loss of impulse control – wont bathe or afraid to bathe, trouble dressing
- Gains and then loses weight
- May see or hear things that are not there
- Needs full- time supervision.
Terminal stage: one to three years
- Can’t recognise family or self in the mirror
- Loses weight even with a good diet
- Little capacity for self- care
- Can’t communicate with words
- May put everything in mouth or touch everything
- Can’t control bowels or bladder
- May have seizures, experience difficulty with swallowing and suffer persistent infections.
Adapted from Care of Alzheimer’s Patients; a Manual for Nursing Home Staff (Gwyther, 1985)
As can be gleaned from this simple if somewhat outdated descriptive model, persons living with dementia go through a number of differing ability and disability levels as their dementia progresses. Differing conditions within the dementia spectrum also offer differing levels of challenge and opportunity. For instance, while a person with Alzheimer’s disease may progressively lose almost all previously held abilities across the activities of daily and instrumental living, the person experiencing multi infarct type dementia may only lose ability in the functional areas of the brain damaged by the infarct (Dawbarn & Allen, 2001). They may therefore retain much function in other areas and retain much enjoyment of life in many areas until natural death.
Dementia design needs to encompass these differing ability levels and it is therefore essential that whenever a change in environment support level is assessed, the assessment is based on the persons, strengths, losses and stress level not simply on disease or length of time with symptoms.
Of course the prohibitive factor in designing for so many individual needs in one specific client group is cost (Judd, Marshall & Phippen 1998).
But as dementia is as individual as every person who experiences it, the need for variety and individual preference must run through the whole design and we should never sacrifice quality of life for cast savings.
Choosing to create three or more areas that differ in their ability to provide new levels of progressive support seems one such way of curtailing excessive costs while increasing choice and reducing the environment pressures.
If each built area is designed to also run separate but adjacent to each other, with only scant restriction between each area, individuals will tend to migrate to the environment that offers the most stimulation or provides the least challenge, and this is entirely consistent with the adaptive response ethos.
Till next time
Paul Smith – Dementia Care Expert